Wednesday, November 28, 2012

Have I somehow angered Karma?

I have to say, this year is not winding down well.

Here's the good news: Tera had a follow up appointment tonight to see how her pneumonia is clearing up and as of today, her lungs sound clear.  It doesn't mean that it's gone; in fact the still lingering cough indicates it's definitely not yet, but it's on its way and the doctor feels confident enough to not subject Tera to another x-ray.

Here's the bad news: at the same time that I was with Tera at the doctor for her pneumonia, Tom was at the vet with the cat to find out why she hasn't been eating and doesn't seem to have gotten any better since she was last there a few weeks ago.  When we took her in about three weeks ago they determined she had a urinary tract infection and gave her an antibiotic.  Based on her kidney history, they also did a blood work up and urinalysis and had told us that her liver and kidney functions were normal.  At the time we felt a lot better about the situation and were relieved it was only an infection.  But as time has gone on, she's actually eating less, and last night just peed in the middle of Tera's bedroom floor which she has never done (not carpeted) and we knew something was wrong.  When Tom came home and handed me a Kleenex before delivering the news, I tried to prepare myself.

The doctor says it's either cancer or a bad infection, but seems to be leaning more towards cancer.  She's lost two pounds in three weeks (she was only 8lbs to start) and with her lack of eating it's not good news.  We can have an x-ray done to see if they can narrow it down to either possibility but if it's an infection they would do antibiotics and if it's cancer they would give her a steroid.  The doctor did both today to see if either one helps at all and we just to have to keep an eye on her weight.  If she loses more, it's more than likely cancer and at 13 years old, we're just going to have to make another hard decision when the time comes.

I've been in disbelief all evening.  Not necessarily because of the news; she is 13 and she's had a history of kidney problems since she was a kitten and she's really not been herself the past few days, but because I'm not really sure how we're supposed to be able to make this type of decision twice in one year.  Really, twice in six months.  And then my heart just hurts to know our little kitty, our first little furball together, is probably in pain or at the very least, uncomfortable.

I suppose all we can do is try and keep her comfortable and show her that she is loved and then hope for the best.

Monday, November 26, 2012

Update and 21 months!

I've been trying to find the time to post an update to our craziness and today is the first time I've had.  So far, in Tera’s first 21 months of life (yes it’s 21 months today!) she’s had pneumonia three times.  The first time was pretty severe: both lungs and her doctor couldn't believe that she was as happy and seemingly unaffected as she was.  The second time she ended up in the hospital because her breathing was so labored.  This third time was supposed to be the most minor case she’s had, and yet it seems to have lasted the longest and caused the most discomfort, exhaustion, and stress on all of us.  At one point during the past three weeks, for almost a week, Tera was on five different medications: two antibiotics, two nebulizer treatments, and an oral steroid.  These messed with her sleep, her stomach, but worst of all, her temperament.  Our usually happy, easy going girl was whiny, uncomfortable, unhappy, and just generally miserable. 

We thought we had been having a really fun time with all of this, and the three doctor visits and one chest x-ray, but then things got even more exciting when Tom and I both managed to get what we think was food poisoning sometime last Monday.  I ended up having to leave work halfway through the day on Monday, Tom got sick early Tuesday, and we both dragged our still nauseous, tired bodies to work on Tuesday and hoped for the best. 

Fortunately Wednesday we were both off of work and we dropped Tera off at daycare to get some much task-completion time.  I was moving a little slower than usual and still didn't feel 100%, but we managed to get quite a bit done and felt back to ourselves by Thursday morning. 

Unfortunately Tera was not feeling herself by Thursday afternoon still and spent the majority of the her time with the family during Thanksgiving dinner whining, unhappy, and tired.  We put her to bed early and hoped for the best.  While she slept well, the best that I had hoped for turned into her waking up at 4:50am on Friday, but happy.  And that seems to have been the turning point in this whole fiasco.  She had finally finished her oral steroid (which we think was causing the biggest change in her temperament) and she was back to the little girl who made us smile and laugh. 

This is a traditionally very busy weekend for us and our family, but I was able to do a lot that I wanted to.  I finished a lot of chores I've been wanting to get to, we cut down our Christmas tree, put out our Christmas decorations, and finally decorated our tree last night.  And here is where I need to credit my amazing husband.  While I love my house, there are certain things I wish were different; one of these things is our entryway.  Our garage was added after the house was built and so we don’t really have an entryway, we have a front door.  Since I've become obsessed with Pinterest I see all these beautiful entryways that people have decorated for the holidays.  Tom is aware of this desire of mine and has done everything he could this season to make our “front door area” into more of what I've been hoping it could be.  The man is incredibly skilled at being able to takes my hopes and turn them into realities and for that and a thousand other things, I love him so much.

And finally (yes I know this is long but I haven’t been able to write!) my beautiful girl is 21 months today.  I didn't even get a chance to do updates at 20 months so I’m really behind and I don’t even know where to start! 

She is walking all of the time now, pretty much no crawling at all anymore.  She still looks a little wobbly at times, but she is working so hard at it.  She loves being able to walk on her own into the house and down the driveway.  We've been trying as much as we can to let her do the things we know she can independently so most days she walks into the house when she gets home from school by herself, she climbs up the stairs for bath time and bedtime by herself and goes into her room.  She’s getting better at using a fork to feed herself and has done pretty well (prior to the pneumonia) with open cup drinking.  She’s recently added the words “fish” and “cookie” to her signing repertoire and adamantly shakes her head "no" at things she doesn't want (I’m not as thrilled with this development).  She seems to understand more directions (whether she chooses to follow them or not is another story)  and is beginning to imitate a lot more.  And finally one of our favorite new things that she does is bend over and put her hands on her knees and laugh.  It’s like she’s just heard the funniest thing and just can’t contain herself. 

Okay, I think I’m somewhat caught up.  I was hoping to be able to write a “thankful” post this weekend but that didn't happen and despite the past few weeks, I really do feel very thankful for many things.  I’m hoping to share that in the next day or two.  A huge thanks to everyone for sharing thinking about us and Tera these past few weeks.  It makes a huge difference to know that in our most stressful times, we have so many people that care for and love us.  We couldn't do this without you all.   

Saturday, November 17, 2012

Pretty much done with this

And the pneumonia saga continues. We thought she was getting better; then today her coughed sounded worse, but she still seemed better overall.  We went out to the mall earlier this afternoon to run some errands and while waiting outside the kiosk where Tom's watch was being repaired, all of a sudden Tera threw up the contents of three baby food pouches.  This was of course great timing (although I suppose it would have been worse inside a crowded store) and we had to rush to find a bathroom to change her in.  When I finally got her in what was thankfully a large bathroom with a lounge area big enough for her stroller and with some chairs, I took one look at her and didn't even know where to begin.  I finally got her cleaned up, changed (into some clothes that were apparently too small) and we headed home.

We got home, got her inside and her and I were sitting on the couch when it all happened again.  This time, of course it was on me and her and the couch.  We got her clothes off and decided it was time to call the doctor to see if we were going to the hospital.  The on-call doctor basically said that while it wasn't great that she was throwing up, if she wasn't running a fever and her breathing didn't sound labored, it wasn't an emergency but that we should plan on bringing her into sick call tomorrow morning to have them reevaluate her condition.  At that point I felt like it was time I got in the shower and so Tom gave her the two nebulizer treatments and her antibiotics.  By that time she was acting completely fine.  She played, was smiling, and being silly and signed "eat".  We gave her her yogurt and some noodles and while she didn't eat a ton, she ate enough and seemed fine doing it.   Shortly after finishing dinner and Skyping with her aunt, she started getting very tired and we decided that while a little early, given what had already happened, bedtime was probably not a bad idea.

We headed downstairs to try and relax and watch a movie and got about an hour in when we heard her throw up yet again.  We cleaned her up and despite Tom and I being devastated that our sweet little girl is suffering, she calmed down quickly and fell back asleep quickly as well.

After we got to the ER last time she was sick
Let me just state at this point that Tom and I don't even know how to describe how we're feeling.  We're both exhausted from all the stress of this week and a lack of sleep.  We're now also worried and confused as to what's going on with her.  Both of her last two cases of pneumonia started out as a cough for about a week then culminated in a fever spike and hours of throwing up which then led to the diagnosis of pneumonia  and during this last time, a trip to the ER and subsequent 24 hour stay from hell.  This time we think we caught it earlier, but the recovery and the effects from the steroid in her nebulizer treatment have lasted so much longer and now we don't even know if she's getting better.

I'm very certain that the throwing up is a result of her swallowing too much mucous, but I'm not sure if that's a good sign because she's getting it up out of her lungs but then ends up swallowing it, or a bad sign because there is still that much mucous present in her lungs and her coughs still don't seem productive enough to be clearing much.

Just as an informative side note: in Tera's case our theory as to why she's already had three cases of pneumonia is that when she gets a cold or any kind of upper respiratory infection, her low tone prevents her from producing a strong enough cough to clear the gunk out of her lungs and because of her asthma, it makes her more susceptible to these kind of infections which has resulted in her having pneumonia three times in nine months.

So there's our current situation.  We'll see what the rest of the night and tomorrow morning brings.

From Day 2 of her last case of pneumonia at the hospital

Thursday, November 15, 2012

Our week

I’m tired.  This has been a long week and though I've wanted to post a couple times, I just plain ran out of time and/or was too exhausted.  So here’s the recap of our week:

Sunday morning we took Tera into sick call because she developed a nasty sounding cough all of a sudden combined with a fever and not feeling well.  The doctor said it was a cold that was complicating her asthma, not pneumonia yet and we were told to put her back on the Albuterol to help keep her airways clear and that we should follow up with the pediatrician (the longer version of this is that we weren't terribly thrilled with the on-call doctor for many reasons, but anyway).  We debated whether or not to make the appointment but Monday morning she still didn't sound great so I made it for Tuesday night.

Monday night sucked.  She was up at least four times, coughing a lot, completely congested, very restless and when she was actually sleeping, it sounded like a freight train was going through her room when in reality it was her breathing. 

Tuesday we brought her to the doctor and after listening to her lungs and our description, he diagnosed her with her third case of pneumonia since last February.  Really?   This poor child.  We told him that the Albuterol was making her heart race and he switched her to something else.  Then we had to go to pick up the antibiotic and new steroid and by the time we finally got home it was around 7pm.  Then we still had to give both of her breathing treatments, the antibiotic, and get her to bed.  Well that would have been difficult enough given how tired we were, but then the steroid kicked in and she was wide awake.  She didn't end up going to sleep (and this was after almost an hour of trying) until a little after 9pm. 

Wednesday she had a better day at school, seemed to be feeling better but didn't get her treatment until 2pm and we’re supposed to do it every six hours.  Last night we pushed it as long as we could without trying to do it too close to bedtime, but apparently we failed as she was up until 8:30.  Her normal bedtime recently has been around 7pm.   Then when she finally went to sleep, I was able to begin getting some of the things done that I needed to and I finally went to sleep around 10:30. 

I love this time of year, but I've already had to regroup too many times.  As it is I’m writing this at work because I've finally caught up on work stuff, but I can’t get anything done at home.  I always struggle with the holidays, especially now with Tera.  Mostly it’s because I want everything to be special and I want things to be meaningful and that takes time, which I don’t seem to have a lot of.  My family and my husband will say just to take it easy and not over do it and make things simpler this year.  Except that doing these special things is what I enjoy about the holidays so not doing them doesn't help either.  I feel like I’m letting myself down either way and I honestly don’t know how to find a happy medium. 

My goal every year is to try and simplify, ask for help when I can, and try not to wait until the last minute, but that typically doesn't all happen.  I suppose I will once again do my best and through the craziness, try and enjoy myself and my family.  
From this time last year...

Sunday, November 11, 2012

Rough Sunday

Today was a rough day.  Tera was up at 4:45 and we figured out fairly quickly we'd have to take her to sick call  due to a nasty sounding cough, wheezing, and a fever.  Add to that our cat has started peeing in my office.  She's had various kidney issues in the past, but nothing for years.  After a week of some unusual behavior, I noticed the undeniable smell of cat pee and we've had to keep her upstairs since.  We have to take her in this week and we're already worried it's not going to be good news.  And if all that doesn't sound like enough fun, Tom and I are both experiencing incredible back pain.  We had both been looking forward to this weekend because it's the first Sunday in a while we haven't had plans and he hasn't played hockey and instead of a relaxing day at home, we had to take Tera to the doctor, go to Target to fill her Albuterol prescription, and go to Home Depot for a black light to find the cat pee.  That would have been enough but then Tera only took a 30 minute nap.

I won't lie, I was close to tears a few times today.  My little girl has an awful sounding cough that is a result of a cold and complications due to her asthma.  She also seems to be teething on top of the virus and lung issues.  I'm really worried about our cat and feel awful that she might be in pain.  And I'm so exhausted from a lack of sleep due to all of these things.

It's ironic that I just posted how lucky I was feeling and now all of this.  At one point today I was scrolling through some quotes I had found on Pinterest and I decided that instead of posting several of them on Facebook to illustrate my feelings, I would include them as part of my post tonight.  Think of this as a collage of feelings and thoughts that I'm experiencing today.
You never know how strong you are until being strong is the only choice you have.Strong.just a little something I like to sayLol!!....happinessYEP!!Great quote on being a good mother.
This is a little old (almost a year), but it's one of my favorites and I needed a smile tonight...

Tuesday, November 6, 2012

Back from my hiatus

After a month of continuous posting (minus a day or two here and there) I felt I needed to take a break, but mostly it was because we had something going on Thursday, Friday, and Saturday of last week and then Sunday I just ran out of time. 

I was going to post this earlier last week but then I ended up with family guest posts that I wanted to share more.  Last week it struck me once again that we are lucky.  In my readings and in my DS forums, I come across so many things that other children have and go through.  There are conditions and complications that I never even knew existed and when I read about what these kids, and their parents, go through, it always makes me think that Down Syndrome really isn’t that big of a deal for us.  Sure Tera has her problems, but as kids I had strep throat for almost a year and my sister had ear infections for almost a year and my mom dealt with both of us at the same time and still came out alive (though a bit frazzled).  We weren’t what I would consider chronically ill and I don’t think Tera is either, we’re just more aware of it with her because we know her immune system isn’t as strong as a typical child’s might be. 

I will probably always have some times when a pity party for myself, my family, or my daughter (or all three) seems like the most logical way to handle things.   I would venture to guess that most people, even the best at heart, have moments of self-pity.  It’s not always easy for me to see that things could be worse because stress and worry overcome me.  But in the calm moments that eventually come, I can experience clarity and appreciate what I have as a wife and a mom, and even as a sister, a daughter, a friend, a teacher, and everything else that I am. 

In November we celebrate Thanksgiving and though great food and times with family and friends are a major part of it, it really is to give thanks for what we have.  Many people are posting what they are thankful for each day for the month and having just come off a month long commitment to share the stories and experiences that are my life, I think I’ll keep to just sharing when I feel particularly thankful for something. 

On top of everything else I’ve shared, I’m thankful that Tera had such a great day yesterday.  It was the happiest I’ve seen her in a while and her smile and laughter can change your whole day and perspective.