Tuesday, July 31, 2012

Tubes tomorrow

I officially have about one month left before I go back to work and I'm kind of freaking out.  I feel like most of August is appointments and then I once again have to adjust to being able to juggle all of this and work full time.  I feel like there's so many things I didn't get to do this summer, including projects, relaxing, and fun stuff.  Part of it I can blame on the weather because there have been so many days when it was just downright miserable to be outside.  But mostly it's just due to life (very dramatic sounding isn't it?) Despite the fact that I always feel guilty for being home when Tom has to work, he always admits that the fact that I can get all of our "chores" and errands done during the week, makes our weekends that much more enjoyable.  Being off also makes it so much easier to schedule Tera's therapies and appointments with specialists that would otherwise take months to get into.  But enough complaining, I'm going to try and enjoy these last few weeks.

Tomorrow Tera gets her second set of tubes in her ears.  I hate the idea of her having to be put under again, even if it's only for a few minutes and is a minor procedure.  I'll be much happier when I'm holding her again afterwards and I know everything is okay.  We're really, really hoping that his helps with her speech development.  We didn't notice any difference the last time, but it was also seven months ago and she's developed a lot since then.  It would be pretty fantastic if after all this that she was finally able to say "mama".

And finally, one of the things that has made me the happiest in the past few days.  This past Saturday my sister-in-law threw a birthday party for my brother-in-law's 35th birthday.  This is an especially meaningful birthday for him, and all of us, because last year at this time he was getting ready for the surgery that would remove the tumor in his jaw, and replace a portion of his jaw with bone from his leg in what would end up being an almost 20 hour surgery.  He then spent five days completely sedated so he could heal and then had several months of radiation therapy to eradicate any possible remaining cancer.  We are very happy to announce that he is doing very, very well and has taken spoiling Tera to a whole new level.  Not only am I happy about us being able to celebrate this, but also about all the people that were able to come to his party.  In a lot of families there is probably not a whole lot of mingling with family and friends, but our family and friends are different.  Our friends are our family and this past Saturday was no exception.  It warmed my heart to know that so many of our closest friends were able to be there to help my brother-in-law celebrate. Tom and I have always hung out with our siblings and our friends together and we love that, one, they all get along, and two, that they have all become friends also.  It's completely natural for all of us to have each other's siblings at gatherings and not only does it make it easier to socialize with everyone, but we always have a great time.  So proof once again that we have the best friends (and family) in the whole world!

An action shot from Tera's new bouncy house at her  aunt and uncle's house
Update on Tera to come tomorrow...

Thursday, July 26, 2012

17 months

Today Tera is 17 months old. I do believe after next month I'm just going to forget the months when people ask how old she is and just say a year and a half until she reaches two.  I've always thought it was weird when people use months any time after 20, for example, "my son is 37 months".  No, he's three.  Anyway, I digress.  Since her baby book only goes up to 12 months as far as milestones, I'm using this as my memoir.

Despite the fact that she spent the beginning of the month very sick and the rest of the month recovering, Tera has made big advances.  She is crawling very well right now and can and does pull herself to stand using pretty much anything and anyone.  She's using her bike to walk a lot and needs no assistance from us to get around.  At first we needed to help her get out of places when she got stuck, but now she knows to swing the bike out and move forward and she can pretty much get around anywhere on the first floor.  And then there's the stairs.  She loves crawling up the stairs and then deciding which room to go into.  She loves the bathroom because she can pull everything out of the garbage and then destroy the toilet paper.  She loves the workout room because it's where the cat is a lot of the time and we really can't let her in there so it's of course, very appealing.  And she loves our room because we now have mirrored closets and boy does she love looking and talking to herself in mirrors.  The room she attempts to get in the least? Her room.  She also loves to look back at you, see what your reaction is and laugh her silly little laugh as she moves again thinking she's going somewhere she's not supposed to.

One of the areas I'm most excited about is her signing.  She can now sign "eat", "more", "all done", and "kitty" without prompting.  This week she completely amazed me by putting "more" and "water" together.  Her sign for water is a little iffy, but she signed more and then put her hand to her mouth and she already had food in front of her so I tried water and every time she did the two signs together she already had food in front of her and would drink the water when I gave it to her.  Then a few days ago she was trying to get a toy out of her bin and couldn't reach it and kept looking at me frustrated.  I did the sign for please and she immediately replicated it and I gave her the toy.  She looked so happy with herself.  I really think we've hit a turning point because I think she's finally figured out that when she does the correct sign, she really does get what she wants and what she's asking for.  After waiting so long for this after practicing for so many months, I feel like the number of signs she can do without prompting is really going to take off soon.  I'm even more excited about this now because after talking with her speech therapist about her upcoming review, she's placing her at around 10 or 11 months of age.  She's mastered all the 6-9 month skills except recognizing people's names.  She still doesn't seem to react at all when we say "mommy" or "daddy", or anybody else.  She would be more solidly in the 12 month range if she could vocalize any words or even more sounds.  She still only does b's and d's.  So the fact that she can sign things to communicate with us is huge.

Yesterday my mother in law and I had lunch with a friend of hers and her friend's daughter in law.  Her daughter in law has a daughter who will be one year next week and they realized shortly after she was born that something was wrong.  Well, after months and months of testing they still don't know for sure what is wrong, but they suspect cerebral palsy.  She has no one to talk to about anything and though she is receiving services for her daughter, she's not receiving any support.  My mother in law's friend thought it would be helpful for her to talk with me just so she knew someone in a similar situation.  It was a really nice visit and I realized afterwards again how very lucky we are to have Gigi's for that very reason.  It was interesting to talk with someone whose child is also delayed but not as a result of DS and we still had so many concerns, problems, and feelings that were the same.  One of the things we talked about, which I want to elaborate on in a future post based on an article, is how difficult is hear some comments.  Most of you know by now I don't get offended by much and what I'm about to share doesn't offend me, it's just hard for me and other parents of special needs kids to hear.  Many times when we say that our child isn't doing something we get a comment similar to, "oh you should be glad they're not _______ yet, mine is and they're into everything!" What's difficult for us "non-typical" parents is that we do want them to be doing whatever the skill in question is.  Many times, we've been waiting months for it.  So while we appreciate the need to help diffuse the frustration, a better response may be, "yes, I imagine that would be difficult" or just say, "yep that sucks, but he/she is doing really well at ________".  I know from what I've read in the past year and a half that it can be just as difficult to be the other person in the conversation with a special needs parent, but I've just found the the less patronizing you can be and the more understanding, the better.  And if you're ever in doubt about how to handle a situation and are afraid of offending someone, just ask me, remember, I don't get offended by almost anything.

So next week Tera gets her second set of tubes and the following week is her 18 month review (a little early but scheduled before everyone goes back to school).  While I really am dreading going back to work and losing all the quality time I get with my girl right now, I am very anxious to see what she does next month.  And maybe, just maybe, we'll break through the 20lb barrier! I'll try and weigh her tomorrow and include that in my next post.
Did I mention she's reading? :)

Monday, July 23, 2012

Ups and downs

In three days my baby will be 17 months old and in two weeks she will have her 18 month review for Early Intervention.  About one year from now, her review for Early Intervention will consist of getting her ready to transition to Early Childhood and my little girl will officially be in school.  As I look around our house at the numerous pictures we have, I realize how fast time has passed and I can hardly believe that the tiny little person in so many of those pictures is where she is today.  

Last week I had to delete a lot of the videos on my phone to clear up some space and as I went through them all it was hard to believe the difference between then and now.  Obviously she looks different; she was very much still a baby and had little to no hair and now she looks more like a little girl and has a full head of hair that is growing like crazy! But it is of course more than just her appearance.  I watched a video that I remember sending to Tom at work because she was doing such a good job of reaching for toys above her and at the time that was a big goal.  There were a few with her trying to hold her head up and she still kind of  had that bobble going on and several from when she was just starting to eat solid foods.  Now I look at her and she's so close to walking, crawls like a little demon, pulls herself up on everything, goes up the stairs, feeds herself and drinks from a straw, and is signing more and more every day.  
From around a year ago
She has such an amazing personality full of happiness, love, smiles, giggles, and trouble.  Today alone she has been all over the house getting into all sorts of new trouble and laughing the whole time about it.  We never know what each day will bring with her and she continues to amaze us and make us so incredibly proud.  

And then there's the flip side of things.  She's already been fairly sick this summer (though I think we're in a good stretch right now) and I think the number of doctor visits will end up totalling near if not more than twenty by the time I go back to work.   As a result of the pneumonia and the fact that the doctor thinks she has asthma, we have to give her a nebulizer treatment every day.  At first we were just using a tube in front of her face instead of a mask because the one they gave us was way too big for her little face.  Last week we just ordered one for her and now I feel like she's better off because she's getting more of the medicine, but it's also kind of difficult to see her behind that little mask.  It reminds both Tom and I of when she was sick and it also reminds us that she can very easily become that sick again if we don't do it.  I know there are lots of parents that have to do this and you do it because it will make your child better, but deep down it also breaks your heart because they need it at all.  

She also has to go in to have her tubes replaced.  Another time of them having to put her under and though I know it's a simple procedure, I still worry.  Then after her tubes she has a follow up with the cardiologist and a follow up with the endocrinologist.  Then she'll have to have her hearing tested again before we go in for the follow up after her tube procedure.  This is in addition to the four therapies a week she'll be getting after her EI evaluation in two weeks.  

Every day she gets a spray of Nasonex in her nose and takes her thyroid pill first thing in the morning, then we do her nebulizer after breakfast (though I think it will be moving to after dinner so I don't have to suffer alone).  At dinner every day she gets Greek yogurt with her probiotic and flax seed to help with constipation and as of late, sometimes a dose of Motrin to help with the fact that she has molars coming in.  Now after her tubes we'll have to get ear drops in for a few days as well and if she starts to get sick again, we have to up her nebulizer treatments to twice a day to try and prevent pneumonia again.  It's getting to the point where I feel like I need a list on the fridge of not only what strategies to be working on, but also her whole list of medications so we don't forget anything.  

I know some of these things she may outgrow, but to be perfectly realistic other things may take their place.  For now we deal with the issues we can and take solace in the fact that her list of accomplished milestones is growing every day (along with our exhaustion as we try to keep up with her).

Wednesday, July 18, 2012

Tera's new classroom

Yesterday was Tera's first day in her new classroom and I think I might have been more emotional for that than when she first started at school. I was and am very excited for her to be in the toddler room because Tom and I, along with her therapists, really think it will help push her physically and developmentally to the next level and help close the gap between her and other kids her age.  I think the reason that I was more nervous this time was because she now has to keep up with other kids and there are more adjustments for her.  When she started in the infant room at six months there were no expectations for her to be in there.  In her new room they only take one nap so she has to ease down to that.  They sleep in cots instead of cribs, but in this case they're keeping her in a crib for a little while since she's such an active sleeper and they don't want to change everything for her all at  once.  And finally, the big one, almost all of the rest of the kids in her new room are walking.  I'm so incredibly proud of what Tera has been accomplishing lately and she's making huge strides in her ability to get around both by crawling and walking using furniture (and sometimes people), but it's hard to gauge when she'll actually be able to do it without aides. 

On her first day she did very well.  She didn't quite make it to nap time and slept for a little while before lunch.  When they woke her up for lunch she ate very well (in fact she apparently then tried to steal some food from her neighbor) and then took a two hour nap after lunch.  She seemed very happy when I picked her up, but was understandably more tired last night and had we not gone out to eat and had a friend over, I doubt she would have made it even to 7:30 which is when she finally crashed. 

Today she was already a little tired by the time she had PT, then she had a full hour of PT, and then fortunately had a 40 minute nap in the car on our way to a fun visit with my friends from work and their kids, one of which is one of Tera's buddies.   We had a nice visit, she ate more than usual for lunch, and then she and Charlie got to play in his water table.  But by 1:00 she was already getting tired again and ended up taking a two hour nap that might have lasted even longer if I didn't have to move her back out to the car later in the afternoon for a pre-op appointment with the pediatrician for her tube surgery in August. 

I'm not sure if her seeming more tired today was still a result of yesterday or there's another reason.  She also seemed more tired this weekend and so far we haven't noticed any other symptoms so I'll chalk it up to a growth spurt or teething or any one of those other things people always seem to blame when their child is acting slightly out of the ordinary.  Tomorrow she goes back to school again so we'll see if she comes home all caught up with her peers :)

Her crazy hippie hair that is growing like crazy (this is why it's always up lately)

Monday, July 16, 2012

Emotional? Who, me?

If someone were to ask me which part of motherhood was the least anticipated I would answer without hesitation: the emotions.  While there are certain parts of parenting that you know will happen but don't truly understand until you are in the throes of it, the emotions are what took me most by surprise.  Of course in my case the emotions were the hardest part at the beginning because we were reeling from the shock of her diagnosis.  Then came the fear and the sadness and at least some acceptance.  These days I experience mostly pride, happiness, stress, and worry. 

I mentioned that last week I was experiencing some days of envy; envy that other kids Tera's age and younger are doing things she's not yet.  I don't know that that will ever go away, my guess is it will come and go like so many other emotions.  Yesterday as Tom, Tera, and I were sitting downstairs I was suddenly overwhelmed by worry that I wasn't working with her enough on her current goals.  I don't usually feel like this and you would think that given the fact that Tera made big strides last week with her walking and moving up to the next classroom at school, that this would be the last thing I'd be worrying about.  But unfortunately, reason is not one of those things I'm overwhelmed with and I just couldn't shake this despondent feeling that I was failing her. 

I think part of what brought it on was remembering that she had speech therapy this morning and realizing I hadn't spent much time on the little toy we were supposed to practice with or trying to get her to retract her tongue and round her lips.  Since the time Tera first started receiving speech therapy people have laughed and wondered why a baby needs speech therapy and I've explained that it also covers feeding and really anything oral.  It also works on her unspoken language and her receptive skills.  We are currently working on increasing her signs (she does two without any prompting, "more" and "eat", and "all done" with some prompting) and trying to get her to keep her tongue in when drinking from a straw and her bottle.  Today we also added pairing visual cues with words so that she begins to understand more language even if she can't verbalize it.  This one actually happens to work out well because it's one of her big goals in developmental therapy also.  Since speech is the area that she seems to be most delayed in, I think it bothered me more that I hadn't worked hard at it between sessions. 

Then as I began to think about that it of course led me to thinking about all of the other strategies we're supposed to be using and I just felt so overwhelmed.  Tom always reminds me that we do what we can and during my rational moments this makes sense.  During my irrational ones I worry that what we are doing isn't enough. 

Not that it's any shock, but just trying to remember to introduce new methods at the appropriate times is the hardest; once we've done them a few times it's much smoother.  I remember when we first started signing to her during mealtimes and I'd realize so many times after she had finished eating that I hadn't done it all.  Now every time I say a word that we know how to sign I automatically do it and don't really think about it. 

Today Tera had been totally fine, but I was exhausted from not sleeping well and her waking up at 5:30.  I was hoping since she'd only napped for 20 minutes this morning (I was actually trying to skip the nap all together but she crashed in the car on the way to the store) that she'd go down easily and quickly in the afternoon.  I was not that lucky.  It wasn't the worst nap time beginning by any means but I was frustrated that there was a struggle at all since she should have been tired.  After 20 minutes she finally fell asleep in my arms while I was rocking her and all my frustration turned to an overwhelming urge to just squeeze her and kiss her forever.  I sat with her for about 15 minutes and then finally forced myself to put her in her crib and so I could finally shower.  I've been wondering lately how I can feel so tired at times and part of it is I'm not sleeping well, but after taking a moment this afternoon to just reflect on that sudden change in feelings I realize a big part of it is just an emotional toll.  Since I've been home with her this summer she's been either sick or not completely herself and I spend big chunks of my days and nights wondering and worrying about what it might be this time. 

If emotions are in fact to blame for my tiredness, then I don't expect to feel rested ever again for the rest of my life. 

Friday, July 13, 2012

A big week for a little girl

So after a hectic few weeks with Tera's health she is recovering well from her last bout with pneumonia.  So well in fact that she's getting dangerously near to walking! I've written several times about my feelings regarding Tera's being able to walk and while I know that it will probably come with some additional frustrations because she'll be accessible to even more trouble, I truly believe it will make so many situations so much easier to deal with.  Anytime she is confined to anything for too long she gets very antsy and irritable, but crawling isn't a realistic option many times (restaurants, the zoo, doctors office, spray park, etc.) but when she can finally walk, she'll be able to stretch out a little more and burn off some energy.  One of the things I've learned from my circles of other parents of kids with special needs is that while the milestones may come slower, when they do come it's with that much more appreciation and I really do believe that.  I know that most parents are probably very proud and excited when their kids are able to do something new, but when it's something they've been working hard for and are already behind in, it makes you even prouder and that's true of many situations. 

Our other big surprise this week was finding out Tera will be moving up to the next room in daycare.  Tom said it best when he posted that it was the small victories we look for, but we really are very excited, and a little nervous for her.  She'll be back to being the little kid (size wise at least) and it's a room with a lot of physical activity so I'm a little nervous about her being able to keep up.  She has a few adjustments to work on like moving one down to one nap, slowly eliminating her bottles, sleeping in a cot instead of a crib, and walking.  They're going to keep her in a crib for a month or so to minimize the changes right away, but her teachers and the director (and us and her therapists) all think it's the right move to try and keep her motivated and challenged.  Our original goal had been by the end of the summer so we're anxious to see how she adapts.  Another plus is that she'll be with one of her best buddies again. 

With all of these new achievements I've had to come to grips a lot more with the fact that she's not a baby anymore, she's a toddler; and I have to say, I'm thinking this is way more difficult than infancy.  Granted when they are infants there is a lot of care involved and they are obviously more dependent on you, but that just seems like if you follow your instincts and fulfill their basic needs, you're doing a pretty good job.  Now that she's older, we have to discipline her and decide how and when to do that.  We're identifying more social issues like sharing and throwing things than developmental issues when we were just trying to get her to reach for the toy above her or transfer something from one handd to the other.  I'm not saying infancy is easy, I'm just thinking that at least for me, this stage is harder. 

I'm also missing certain routines that we had when she was more dependent.  From the time we brought her home from the hospital, we've always given her her morning bottle in bed with us and then we play for a little bit in our bed before going downstairs.  It's been my time, many of the mornings, to snuggle with her before the day starts.  But in the past week I've eliminated her morning bottle and switched to her straw cup for her milk so that she can at least take her thyroid pill.  When she's drinking from the cup she doesn't really snuggle with me and honestly she doesn't have a lot of patience for it first thing in the morning so we're really only in our bed for a very short amount of time before she's super antsy and I have to bring her downstairs.  It's something that I've really missed this week and yet another sign of her getting older. 

Definitely a lot of progression this week, some of it I'm happier with and some of it I'm not, but I knew that no matter how slowly she grew physically, she was in fact going to get older.  I know the answer to this already but I'm going to ask anyway, can't I slow time down just a little?

Wednesday, July 11, 2012

A really nice day

Today was one of those days where I loved being a mom and I loved being at home with Tera.  I would pretty much always rather be home with her than at work, but some days are a little more trying and exhausting and today so far has been completely enjoyable. 

After my willpower post yesterday I mustered up the energy and took Tera out for a run/walk this morning.  I was hoping she would take a short nap and I could finally get a workout in.  My only miscalculation was deciding to go on the scenic route through the Diamond Lake lake house area about a block from us.  There's more shade to protect Tera and the houses are beautiful and unique and make me dream of living on lakefront property.  The only problem is it's rather hilly.  This is ideal when you want a great workout and are a more seasoned and healthy runner than myself who is not a seasoned runner or completely over my cold/virus whatever and as a result my "run" turned into ten minutes of running and the rest walking.  But I was out there for thirty minutes and is more than I've been able to do in a few weeks. 

When we got back Tera managed to sleep for a few minutes longer so I could take a speed shower and get ready to go to the spray park.  Since she is mostly back to being healthy and it's still beautiful outside and not over 100 degrees, we went to the Mundelein Spray Park with a friend from work and her kids.  I've never actually been there before and it's super close and cheap so it was worth checking out. 

The whole spray area is pretty padded, but I wasn't sure how Tera would really be able to play since she can't walk yet.  I held her for a few minutes and we went under the spray together a few times and then I tried putting her down and she took off crawling around the water! I do think her knees are a little scraped up because it's not a perfectly padded or smooth surface but she was able to get around and started to really like to put her self in the water fountains.  After a little while when she was on the ground, a few older kids (probably around 5-7 years old) came over and wanted to play with her which she loved! One little boy just kept wanting to basically pet her which was really cute (a little odd but she's pretty freakin' adorable so I do understand) and then they tickled her feet and she was just one of the kids. 

After about an hour I figured she'd probably had enough so we packed our stuff up and headed home for lunch.  I made her grilled cheese (her absolute favorite) and green beans and she ate everything for once on the first try.  Then we played on the floor for a while and she went very easily down for a nap which is giving me time to write. 

We were supposed to go to her playgroup tonight but given how crazy everything has been for the past few weeks, I think Tom and I are just looking for some nice relaxing, family time evenings.  Yesterday we took her for a walk and to the park and tonight we'll probably either try that or maybe the spray park again. 

This is one of those days where I can forget all the complications that have gone along with her and just enjoy my time with my girl.  Then tomorrow and Friday morning she has therapy and we'll go to Gigi's and I'll think about things again. 

These past few weeks I've had more moments of being bothered by some of her delays.  I keep seeing other kids her age who are walking or verbal and it's hard and it sucks sometimes.  I've been working with her for months to make more than just two sounds, but it's still just b's and d's and "uh-oh".  She is signing "eat" and "more" and sometimes "all done" which I'm so excited about and so very proud of her for.  I've had so many people tell me to be careful to wish for her walking but that's easy to say when your kid already is.  Times like today when she was one of the only kids, and not the youngest, who wasn't walking is hard to see because it would be so much easier for her to have fun there if she could get around more (and a little easier on her poor little knees). 

But I suppose I'll take the fact that she's beautiful and funny and sweet and all mine and just wait a little longer for words and walking. 

Tuesday, July 10, 2012

Where oh where has my willpower gone?

When people ask me at the end of the summer if it was relaxing, I'm hoping my answer will be yes.  But if you were to ask me right now, I'd probably laugh.  First off, let me just get out of the way that yes I understand not everyone gets summers off to which I am always thinking in my head that it's every one's right to go to school and get a degree in education and then hope that you have enough patience to make it through nine months with hormonal teenagers to even survive until the summer, but I never say that.  Anyway, I did choose education and because the government decreed it long, long ago, I do in fact have summers off. 

However, so far this summer "vacation" we've had to put our dog down, Tera was sick for well over two weeks including a weekend in the hospital, I've been blowing my nose for two weeks, I've been to the dentist three times, I'm not sure how many doctor appointments we've had yet, she has surgery scheduled in the beginning of August to have her tubes put back in, we thought for a few hours tonight she had pink eye (I think it was just sunscreen in her eye) and it's been one of the hottest summers on record.  All I'm saying is relaxing hasn't been part of my vocabulary recently.

This was supposed to be my summer to lose those last stubborn 8-10 pounds after having Tera.  Just before I got pregnant I competed in a figure competition which basically means I was doing kind of light-weight body building.  I wasn't one of the those amazon women you see on TV, but I was in the best shape of my life and I weighed less than I ever had as an adult.  Many people said I was crazy to get pregnant right away after having just put myself (and my husband) through hell, but I looked at it as being in the best shape to get pregnant.  I'm going to go out on a limb here and state that I gained about 35 pounds during pregnancy (I'm not a fan of sharing numbers so this is a big deal to me) and I have about 10 pounds left to get back to where I was just before I got pregnant.  The biggest obstacle to me here is that I had worked my ass off for almost a year to get to that weight and trying to get close to it again is very daunting.  Just to clarify, it's not the weight I was the day of my competition; that weight was attained after not having eaten really anything for two days and almost no water.  My goal is to get back to about 10 pounds more than that day, but 10 pounds less than where I am now. 

When I was training, and I did it basically twice; once for a competition at my gym and then for the figure competition, I had tons of people telling me how dedicated I was (and how crazy I was) and how they could never do it.  Well, I'm here to tell you, anyone can do it because I was one of those people who used to say that and then I did it.  But now I sit here and I'm thinking it again.  I cannot get my act together. 

At the beginning of the summer we bought a jogging stroller at a garage sale so I could start running.  And let me just say, I hate running so the idea of me doing is quite comical even to myself.  But I did it a few times and then kind of had some obstacles.  One was Tera got sick, one was that the temperature began to resemble that of the Sahara Desert and since I'm not a huge fan of running in the first place doing it in the blazing heat was not going to happen, and then I was sick, and then it was hot again, and on top of all of that I discovered Tera seems to fall asleep pretty much every time we go so I have to time it just right.  I know, this sounds like a lot of excuses and in part it is.  This would be the result of a lack of motivation. 

I also decided to try doing P90X instead of using my gym membership thinking it should be easier to get workouts in at home.  I can try them when Tera's home, but worst case I can do them when she's at daycare.  The only problem with at home workouts for me is I can always find something else to do.  And especially lately, I try and cram so much into the days when she's not home because I just can't get much done when she is, and I don't want to spend my whole day getting stuff done when she's home with me, I want to be able to do stuff with her. 

Food has been touch and go though I'm still a very healthy eater for the most part so that's the one thing that's been keeping me from going in the wrong direction of my goal instead of just not getting closer to it.  But even with food I find I'm much more likely to eat something I shouldn't than when I used to be able to say no to a whole lot more. 

So now I spend most days feeling guilty for not working out when I should be and it just sucks to feel that way all the time.  I have no idea what I'm going to do about all of this, but I should probably figure it out before I have to go back to work!

About a month after my show and a month before I got pregnant.

Nine months pregnant
A little less than a year ago

Thursday, July 5, 2012

Where the hell did I put my manual?

Today Tera had her post-hospital visit checkup and everything sounds clear.  We have to keep using the nebulizer for a few months; only once a day when she's finally done coughing and twice a day if/when she gets sick again and hopefully that will prevent another bout of pneumonia again in the near future.  The doctor also suspects she has asthma based on the two cases of relatively severe pneumonia she's had in this short period of time. 

Right now my day is based on trying to get her to eat normally again, getting her to sit still for the nebulizer twice a day, and remembering and then administering two doses of antibiotics a day.  Add to that the fact that we're trying to wean down her bottles (which I find somewhat ironic considering we tried for months to get her to drink them) and trying to get her to bed without having to fall asleep with a bottle which means letting her cry. 

I know many of you parents are reading this and may not have sympathy for me here because you've dealt with this longer than we have, but it's another one of those things that just seems to constantly change with her and we just keep guessing and trying to catch up.  The really hard part for me in regards to letting her cry to fall asleep is that she's still sick.  Not really sick like she was, but definitely not 100% and it's really hard for me to listen to her cry and then cough continuously because of it just to make her go to sleep.  For the most part we let her cry for about ten minutes and by then she's pretty tired and all I have to do is pat her back for a few minutes and she's usually out.  That may have been the case tonight had I not realized at the end of those first ten minutes that there was a foul odor emanating from her that required a diaper change and which then resulted in another ten to fifteen minutes of getting her to sleep. 

Which leads me to my question: where is my manual for this parenting thing? So far her whole little life has been a deviant from the norm, so I don't really know what the norm is.  When I was pregnant, every book, every website, even our birthing class said every birth is different, but the one consistent thing throughout it all was that when your contractions are consistently five minutes apart, that's when you call the doctor.  Well my contractions started at 2am sharp on Saturday morning of February 26, 2011 and they were never consistently five minutes apart which led to a very hurried delivery upon our arrival because I was much further along than I had anticipated; that was case one of the deviation.  Case two was slightly more traumatic and had a whole lot more impact and that would be the "diagnosis".  There have been many more deviations along the way, like a rash from the chicken pox vaccine that only 10% of kids get, no teeth until she was 14 months old and then a second tooth that's a molar, two cases of pneumonia in four months, and the list goes on.  So now when she's still not eating like she used to, I check my handy parenting manual to see why that might be happening, and imagine my surprise when yet again I realize the damn doctors didn't give me one! They told me what "should" happen, even what "might" happen, but she doesn't follow those guidelines and we're back to guessing. 

Given the sequence of events she'll probably start eating more next week but want nothing to do with green vegetables (basically the main staple of her diet) and only want meat.  She may decide to make more than just two sounds, but then she'll stop sleeping through the night.  Maybe she'll start walking and forget how to drink from a straw.  I have no idea what to expect from day to day and to be honest, it's getting a little exhausting.  Or maybe it's not the guessing, maybe it's saying the word "no" close to 200,000 times day, or repeatedly removing her from smashing her fingers in the garbage can, or picking up the trail of chaos she leaves in her path, or trying to prevent her from yanking the cats tail, or moving every paper object out of her little sticky grasp, or stopping her from pulling cords, or any of the other number of things we just haven't figured out she'll get into and how.  I know at this point I'm not getting a lot of sympathy and believe me when I say I'm not looking for it. 

Mostly I'm just really glad that at the same time that she's discovered this insanely destructive, devious side of herself, she's also discovered the art of timing hugs and kisses appropriately or I'd be rewriting that Shel Silverstein poem titled, "One Sister for Sale" to "One Daughter for Sale".  Oh, who am I kidding, I can't sell that kid, what would I do with my time?

My little firecracker

Monday, July 2, 2012

Maybe next weekend will be better

So apparently this summer is really hindering my blogging, but I swear I have a good reason this time.

Tera has not had a good couple of weeks.  At this point last year we were commenting on how lucky we seemed to be that she hadn't gotten sick and that maybe she'd just be a really healthy kid; and then month six hit and we've been trying to recover ever since.  I have to say though, for all that she's been through in that time, we've never had to go to the ER; until this weekend. 

Friday morning we went to Gigi's with Tera's aunt and uncle, she got to play, and then we headed home for therapy at 1:00.  My sister was also coming over to paint our bedroom in step two of the master bedroom rehab project.  She napped and we woke her up for therapy around 1.  During therapy since she hadn't eaten lunch yet, we fed her so that she could actually eat and also so the therapist could see how she did with self-feeding.  She ate pretty well considering her appetite had been touch and go for the whole week and after the therapist left, my grandma showed up for a little visit while my sister painted.  Tom was off for the day and had Tera downstairs playing for a while when she started to get a little cranky.  She hadn't napped real long so we figured she was tired and so he tried giving her a bottle.  A few drinks in she threw up, mostly on herself and a towel, a little bit on Tom and a little on the couch.  Not a great thing, but not really a sign of anything yet. 

I took her upstairs, we cleaned her off and she was tired so I tried rocking her in the chair in her room.  All of a sudden I felt it in her stomach and I had just turned her around when she threw up again, this time almost all on me.  Tom took her to wash her off, I cleaned up, and tried calming her down.  Then it happened twice more.  By this time I had Tom calling the doctor because she was now exhibiting all the same symptoms as the last time she had pnuemonia, but now her breathing was labored also and she had a fever of 100.  The doctor told us to come in and after a very short visit, a temperature reading of 102, and a nebulizer treatment, she sent us over to the ER for what she also suspected as pnuemonia. 

Once there they were able to get us right into a room and Tera was completely wiped out.  She had nothing left in her and her fever was now 104.  They gave her tylenol and motrin right away to get her fever down and began the process of trying to get an IV in.  I'm not a doctor or a nurse, but even I can tell it has to be zero fun trying to find a vein in a 16 month old.  After two tries, the poor nurse called in two other nurses to try and they finally had to put it in her hand.  Once she was settled, Tom took off to run home and get us some overnight stuff and pick up some food.  The pediatrician had told us she would probably have to stay overnight at least for observation, but by the time the pediatrician at the hospital saw her chest xray and listened to her, she told us to prepare for what could be a few days.  By the time Tom got back they had moved Tera to a room in the children's wing and she was awake again.  They were going to be doing nebulizer treatments every three hours to try and keep her oxygen levels up and she was getting fluids to replenish her after all the vomiting.  They had also already given her the first round of antibiotic. 

Since she was awake again and it was 10pm, Tom and I alternated trying to get her back to sleep and inhaling dinner since we were both starving.  There was only one bed (and bed isn't really the best way to describe a wooden shelf with a pad on it) and one chair that I didn't realize reclined so we were going to take turns "sleeping" on the "bed".  I had just about given up hope of her going back to sleep when she finally did around 11:45pm.  Tom woke up as she was going to sleep and we attempted for the next four hours to share the "bed".  Around 4:15 I couldn't sleep anymore and moved to the chair where I was pretty much awake until she got up around 6. 

By the time she woke up she was feeling much better, which was good and bad.  Of course I didn't want her to feel sick, but then the realization that we would have to try and figure out how to entertain a very active child hooked up to an IV, a pulse-ox monitor, and confined to a crib, set in and panic ensued. 

Around 8am family had started checking in and we quickly realized we needed reinforcements so we planned to have Tera's aunt and uncle come late morning and Tom's parents early afternoon.  I don't think the three of us would have made it without them. 

When the doctor came in around 9 and listened to Tera's chest, she was amazed at how much better she sounded and told us the words we had been hoping for all night; as long as she continued to improve, we could probably go home that night after they gave her the next dose of antibiotic.  We were elated and began not so patiently counting down the hours.  We napped a little on and off when she did and Tom's parents brought us lunch (this weekend was not great for dieting purposes) and then the time really slowed down.  Finally they came to do the antibiotic and that's when they realized her IV had somewhat slipped out and they wouldn't be able to give her the last dose that way.  The nurse wanted to see if they could do it orally, but it ended up that she had to have two shots, one to each leg, to get the last dose.  Needless to say she was not a happy camper and since by that point we were already coming up on her normal bedtime, it took everything in both of us to get her calmed down until we could leave.  Fortunately that didn't take much longer and by around 9:30 we were finally on our way home.

So that's the really fun tale of our weekend and the reason for my lack of posting these past few days.  One of the things I realized is how calm Tom and I both are in times of crisis.  Neither one of us panicked or overreacted, we were both level-headed in the ER, and we still managed to maintain a sense of humor (upon the second attempt at an IV we told Tera to man-up; the nurse thought that was hilarious and I hope he knew we were kidding).  We did begin to lose our sanity a bit around mid-afternoon and early evening on Saturday, but that was completely due to lack of sleep and on my part, I think the fact that I was and am fighting the same virus that put Tera in this whole mess. 

And of course what do you do during and after a weekend like this but reflect on how much it sucks that your child is going through it and wish with every bone in your body that you could fix it, and at the same time realize how much worse it could be.  That's the part that always plagues my emotional state.  I know that she is going through more than a lot of kids do, and probably will for some time because she just can't fight stuff the same way other kids can.  But on the other hand, I just cannot fathom how I could handle watching her battle cancer, or have open heart surgery, or so many other things that so many other kids do. 

 A slightly less common fact about DS is that there is a slightly increased risk for kids to get leukemia and so in my online groups of other parents of kids with DS, I've come across far too many stories of parents posting about a whole different diagnosis; one that has far more implications than the one they originally thought might.  Also, it is not uncommon at all for babies with DS to have open heart surgery.  I know many parents who's kids have gone through it; sometimes more than once.  I read these stories and I think to myself that if all we have to deal with is pnuemonia, I will consider myself lucky every single day. 

Thank you again to everyone for the well wishes and good thoughts.  It makes things like this a whole lot easier to manage when you know you have so many people willing to do so much to help and is definitely one of the other reasons I consider myself lucky every single day. 

In the ER passed out after finally getting her IV

On Saturday feeling much better

One of the many times trying to keep her entertained.  The red light on her toe is the pulse-ox monitor.

Right after she finally got the IV out and was one step closer to being sprung.