Tuesday, February 28, 2012

Scheduling

I feel like my life is now all about scheduling.  I've always been a pretty organized person so I'm not overwhelmed by the task of scheduling, just sometimes overwhelmed by all the stuff that does in fact have to be scheduled.  For example, this is actually a slow week for therapies, just speech on Thursday, but then on Friday Tera has her follow up appointment with the ENT for her tubes, followed by a hearing test.  Saturday we have to take her in for a follow up chest x-ray, then Tuesday she has a check up with her cardiologist.  We're also in the process of scheduling her one year review in Early Intervention with her therapists which involves coordinating the schedules of three therapists, her coordinator, and us.  At her one year review, her developmental therapist pretty much already told us she'll be recommending that Tera increase to one time a week and I'm guessing speech will be the same.  In case you're wondering, no it's not because she's all of a sudden in need of more sessions, it's more because as she gets older, they're expecting her to be able to do more and she'll need the additional sessions to ensure she reaches those upcoming milestones in a somewhat typical timeline.  We'll probably also have her evaluated by an occupational therapist to see if she's in need of those services.  I won't lie, the idea of trying to balance all of this is a little overwhelming.  The nice part is that we know we can alternate between school and home for her sessions to alleviate some of the scheduling constraints we have with two working parents.  And the fact that there are only so many hours in a week. 

We've had many people ask along the way why we have so many therapies and sessions when she seems to be doing so well.  And my response always is, if a professional thinks she needs it, we're not going to say no unless we think she really doesn't.  I'm not saying the only reason she is doing so well is because of all the therapies, but I definitely think it's a big factor.  She's a very determined little girl and also very strong so I truly believe those are the main reasons for her continued success.  However, she also has a fantastic team of people who monitor her progress, and consistently make sure we're pushing her to the next step.  They always take the time to celebrate her accomplishments, but they are also the first ones to say, "Ok, great job, but let's start working on this now". 

There are definitely times when Tom and I look at each other and wonder when we'll have a normal week.  But then we realize how far she's already come, and neither one of us is willing to sacrifice her success and progress by taking the easy way out.  So we use our fabulous iPhones to keep our lives together.  We sit down on the weekends and figure out what we have coming up and plan dinners and workouts and downtime accordingly.  So far none of it is working out the way we planned.  Our workouts happen if we're lucky and we just try to eat healthier, but then our meals are also a little harder so we do the best we can.  Downtime happens between 8pm and 10pm and that usually includes, cleaning up, laundry, paying bills, and my blogging so I can deal with it all.  But the weekends... Oh yeah, then we clean, run errands, catch up on stuff from the week, and do really try to relax.  Let me tell you, wine and martinis can work wonders. 

Monday, February 27, 2012

The reliving of the bad day


This day, one year ago, was one of the hardest days for Tom and I.  It was the first full day that Tera spent in the NICU when we had to travel to go see her and when we did, we had to maneuver around the 3 lead wires, the IV, the heart monitor , and the NG tube.  People who were coming to visit, couldn’t really see her and even if we could bring them up, it could only be one at a time and only a few people could actually hold her.  I was also told that what was supposed to only be a two or three day stay at the hospital, would now be at least seven days.  But almost as bad as dealing with all of that, was Tom’s role.  While I was taking care of Tera that day, he had the heart-wrenching task of telling all the family and friends that came to visit about Tera’s diagnosis.  To this day I’m not sure how he did it, but I do know that it made him my hero.   Through the past year we have had to lean on each other more than ever and last night was no different.

As I got Tera ready for bed I started to get overwhelmed by emotion.  Considering it hadn’t really happened yet, it shouldn’t have been that surprising.  I can’t even say for sure what was making me cry, but I think it was just all the meaning that that day carried for us last year.  Yes of course it was one of the happiest days of our lives, but it was also one filled with so much hurt and confusion and pain and one year later, that’s not easily forgotten.

We spent a while after putting Tera to bed talking about how we feel now in comparison to a year ago and what things we still struggle with.  We both really think a lot about the future.  We have no idea what is in store for us, or Tera, and for two people who researched their vacuum cleaner for like a month, that’s not easy to deal with.  And for multiple reasons; not only because we can’t plan for every eventuality, but also because it impacts some of the decisions we make now for our futures.  I still struggle with people’s comments at times.  We have yet to be at the receiving end of an “unfortunate” comment, but there are still some that bother me.  I’ve said this before, but if you are reading this and know that you’ve said this to me before, don’t be upset by it, it’s just a personal thing and keep in mind I’m not a person who gets easily offended, I’m just sharing my perspective.  It still bothers me to have people tell me Tera was sent to us because we’re somehow especially capable.  I’m not any more special than most other parents.  Tera’s extra chromosome didn’t magically appear because we’re lucky, it appeared because it does to one out of every 750 or so babies and she managed to beat the odds.  I know there are a lot of rotten parents out there, but there are also some very amazing ones of kids who aren’t “blessed” with an extra chromosome and I’m not any better than any of them because of her situation.  We don’t want to be different (well, we kind of make ourselves a little different but that’s not what I mean) from other parents, we just want to raise our kid the best we can, screw up as little as possible, hope that she has a happy and fulfilling childhood, and prepare her to be an adult. 

We also talked about the moment that is inevitable when Tera is no longer crusing through the milestones and there actually is some measurable delay.  I really feel like the last year has left me completely unprepared for how to deal with that since, for the most part, all of her therapists and doctors tell us regularly that she’s doing great and to just keep doing what we’re doing.  As amazing as she is to us, I’m fairly certain that at some point, she’ll be delayed and that will devastate us. 

So we  both had “off” days at work.  Neither one of us was overwhelmingly upset I don’t think, but I also don’t think much time went by during the day that we weren’t thinking back to the events of last year.  When I got home with Tera,  she played, I got some things done, Tom came home and we had dinner.  She did really well with all regular food (not baby food) for dinner, did pretty well with her straw cup, and we Skyped with Tom’s parents.  It was a pretty normal night overall which I think we kind of needed.  After giving Tera her bottle and getting her ready for bed, the three of us just played together on her bed.  She was so incredibly silly, smiley, and giggly, that it made the whole day end on such an enjoyable note. 

But it’s not always rosy and Tom says that I shouldn’t hold back (I didn’t think that was possible but he assures me there’s more I want to say at times) and he’s convinced there’s a, “this really sucks” type of post long overdue.  And I do believe he’s right.  I do often try to end on a positive note, and not that that’s a bad idea, but I’m a very pragmatic person as it is and so when I feel like something  sucks, I really should say it.  My goal is to share our journey with DS and it’s not always fun and smiley.  But today, after reliving all the pain and hurt, I looked at my baby and I know that today, she’s one very happy little girl and I can rest easier knowing that. 

Sunday, February 26, 2012

Happy Birthday (and photo blitz)

I'm not sure that I even know where to start today.  The past few days I keep rethinking everything that I was doing last year and how everything unfolded.  Last night while at the Gala, I kept thinking back to last year on this Saturday and how the neonatal doctor from Children's came into my room to tell me they thought Tera had an infection and was being moved to the NICU.  It was the last time she would be in my room and ended up in the NICU until the following Saturday.  At that point we were still somewhat reeling from her diagnosis and now we had to deal with the fact that she was being moved.  I remember feeling very numb and overwhelmed and in shock all at the same time.  This morning, her actual birthday, I couldn't sleep.  I just kept waking up and looking at the clock and thinking about what had happened at that time last year.  At 4am I was having pretty heavy contractions, at 5am we called the doctor, by 6 am we were at the hospital, at 7am she was born, and by 9am we were told she more than likely had Down Syndrome.  By 10 am people started arriving to visit and we kept the news to ourselves. 

Last night at the Gigi's Gala we were reminded how many opportunities there are for her and how capable she will be and also that we are now part of something that one year ago we never really thought about.  I only teared up twice (I think).  They asked everyone who had a child with DS under the age of two to raise their hands and it just hit me again.  I think that's one of the hardest/strangest things for me still; to know that so much of our lives revolve around DS and that it still doesn't always register with me what it actually means to us and to Tera.  The Gala was wonderful and we really had a nice time.  We were lucky enough to have several people there who were close to us and were fortunate enough to sit with a very special young man and woman who reminded me that love is in Tera's future and that her having DS doesn't mean she won't have someone special in her life to share all the love that she has in her. 

When she woke up this morning I was so overwhelmed with my love for her and I can honestly say I am excited for her turning one.  I didn't think I would actually get to this point, knowing that it was so hard for me these past few weeks to come to grips with the idea that one year is already gone.  But as I look outside, I realize it is just as beautiful a day today as it was one year ago when we met our daughter for the very first time.  And just like last year, we will spend the day with family and not think about what difficulties might lie ahead.  We will celebrate the fact that she's here with us, how she's changed so many people already, and know that whatever challenges lie ahead, we will tackle them head on.  We are stronger as a family than I ever thought we could be and dealt with more than I ever thought I would have to. 

Anyone or anything that tries to stand in the way of our girl's dreams coming true will have to deal with a whole army of family and friends; and we're a hockey family so it won't be pretty.  I will never stand for someone telling me Tera can't or won't do something I feel she can.  We will support her in her quest to dominate every task set in front of her and when she succeeds we will be her biggest cheerleaders, but we will be followed closely by hundreds of others who will be cheering just as loudly.  Every single person that has supported our family in the past year has a special place in my heart and know that every time you send words of encouragement and love, they are felt deeply. 

Happy Birthday my sweet, sweet girl.  You are one of the two best things in my life and if I never accomplish anything else for the rest of my life, I will be happy to know that I created you and I will forever be the most proud to be your mom. 





















Friday, February 24, 2012

My little super-hero

All day today I've been thinking about one year ago.  I'm referring to the day of the week, not the actual date.  On this Friday last year I stayed home from work because I wasn't feeling well.  I didn't do much that day, cleaned a bit, rested a bit, but mostly just kind of felt uncomfortable.  We had talked about going to dinner with friends that night, but as the time got closer to leave, I started wondering if we really should.  Now mind you, it didn't really occur to me at that point, that I was in early labor.  We decided to go anyway and I was kind of hungry.  As we got closer to where we were meeting them, I really kind of started to hurt.  My stomach was all crampy and I was really uncomfortable.  Tom asked me a few times if we should just go home, but I figured at that point we were already almost there and I needed to eat anyway.  Then we got to the parking lot and I literally sat in the car debating whether to go in.  Our friends came over to the car and asked what was going on and I said I wasn't feeling well and Tim said maybe I was in labor.  I laughed and said I wished.  I remember very distinctly what I ate that night.  I had a side Caesar salad and nachos.  We ate, headed home, and went to bed.  And then at 2 am, it started... But I'll save that for tomorrow or Sunday. 

On another note, Tera has an early therapy session tomorrow morning.  I've been finding myself a little more excited about these sessions than usual because I'm so proud of what she's been able to do this week.  She's so determined to do things, it's inspiring.  I feel like I can almost see the motivation inside and she just works so hard to do whatever she's trying to do.  It's also exhausting because this kid just wants to move! I've said this before, but she has been active since almost day 1 of week 20 of my pregnancy.  I was so anxious to feel her move, but once she did, she never stopped.  Even the day of my ultrasound, the technician thought I had had orange juice that morning (apparently you can drink that to make the baby move more on the ultrasound) because she was moving so much inside they couldn't even get a good picture of her.  And since she was born, it hasn't changed much.  She constantly moves her legs, even while eating.  She just sits in her high chair and kicks her legs the whole time.   The newest challenge is trying to hold her while we give her the various anti-biotics she's on.  By the time we're done, I'm completely exhausted.  I'm somewhat kidding when I say that I think she hasn't gained weight quickly because she burns so many calories just moving all the time, but I'm really only somewhat kidding.  As we sat in the doctor's office on Wednesday while he was telling me how "sick" she really was, she's sitting on the table kicking her legs and ripping the paper all while trying to roll over.

 I can't wait to see how active she gets when she's a little older because I really feel like all that activity will help keep her ahead of the "pre-determined" curve.  I don't know what all she'll want to do, but I know she'll be capable of so very much.
Yes, this is my birthday "girl" after her father changed her out of her dress and messed up her hair...

Thursday, February 23, 2012

Just one more day

Just one more day.  One more day of chaos, grading, stress, and frustration.  It's just been that kind of week and I was only there for four days.  But maybe it's because I was only there for four days that I've been so behind all week. 

What I'm really looking forward to is this weekend.  Tomorrow I get my nails done with my wonderful friend Heather and then it's my solo Chick Flick Friday while Tom plays hockey.  I'm actually not one who needs girlie movies, but there are several that I enjoy and that is the ideal time to watch them.  That or reruns of Bones until I fall asleep.  Saturday morning we have an early therapy session, some errands, and then...The Gigi's Playhouse Gala!! I'm so excited for this.  When we first found out about the event, Tom and I weren't sure if we were going to go, but we changed the date of her birthday party to last weekend just in case.  Once we decided to go, I started to get very excited.  We're going with some very good friends (and family), we get to get dressed up, and while I know parts of it may be emotional, I'm really looking forward to it.  It's a fabulous cause and Tom and I could use a night out after the past few weeks. 

Then Sunday is Tera's birthday.  I'm working my way through this and so far I'm doing ok.  Mostly I just keep thinking about what I was doing on each of these days last year.  It's so weird to think back and realize I had no idea she would be coming so soon and what all would be coming.  As of right now, my brother-in-law and sister-in-law and maybe my grandma and my sister may be coming over to spend some time with the birthday girl.  I really want the day to be special for us because I feel like last year we lost out on some of that excitement and joy.  I don't have any real ideas in mind, just enjoying the day as a family and with our family. 

I think we're going to try and have her take another swing at her cake now that she's more herself so maybe this time we can get some video.  I'm just really looking forward to enjoying how far my baby has come since that day one year ago when I was mostly full of fear and hurt and knowing how far the three of us have come since then.

Wednesday, February 22, 2012

Really?

So today I took Tera in for her one year checkup.  Yes, it's very hard to believe that we're at this point already, but apparently it had to happen some time.  She was supposed to get a checkup and vaccines, but because of the pneumonia, they had to hold off on the vaccines.  Her doctor did her wellness exam anyway since she kind of needed a follow up on the pneumonia and we decided to just wait on the vaccines for a week or two.  So before he starts the exam he pulls up her x-rays (I have to say I love North Shore and their instant access, and mine, to all her records).  He took one look at them and said what she actually had was a pretty sever case of pneumonia and that an adult in the same situation might have been hospitalized for 3-4 days.  Now logic says that since I know she's getting a little better each day, that shouldn't concern me, but that's not exactly what was going through my mind.  He also told me it was definitely bacterial and in BOTH lungs.  He really couldn't believe she looked and was acting as happy as she was while sitting there.  At which point I had to voice my concern about that very issue.  I really can't use her demeanor as a gauge for how sick she is and it's kind of scary to know that she was that sick and we couldn't tell.  We obviously knew something wasn't right, but not that it was that bad.  So he ordered another chest x-ray for when she finishes her anti-biotics to make sure that it's cleared up. 

Then he proceeds with his exam and I tell him that we had found some dark, waxy pieces in her ear the past two nights.  He checks her ear and tells me that she does in fact have an ear infection.  So let's just sum this up:  since February 2nd, Tera has had pink eye, a sinus infection, another/same infection, pneumonia, has thrown up multiple times, and now has an ear infection.  The first ear infection, mind you, that she's ever had and this is after she had the tubes put in.  She is now on her 5th antibiotic since February 2nd, not including the drops for her pink eye.  She was definitely acting cranky these past few weeks, but nothing compared to a lot of other kids and it's no wonder! How many other people would even be getting out of bed with all that?

They also checked her height and weight.  She's lost about a pound in the last month which isn't really surprising considering the vomiting, lack of appetite when she was running a fever so many times, and just in general being sick.  But when I checked her percentiles, my little peanut is now only in the less than 3rd percentile for weight (17.3 lbs).  That's the lowest she's ever been! Her length is now 28.75 inches and thankfully she's at least in the 32nd percentile for that. 

So our day goes like this now: She wakes up at around 5:30 am, Tom attempts to get at least 4 oz in her, we all get ready, then we do round one of the really nasty tasting anti-biotic and we now also add in 5 drops of her ear drops.  Drop her off at school, she eats well, still fights her bottles, Tom and I make it through our days, pick her up, eat dinner, then it's round number two of the nasty tasting antibiotic, the single dose a day of slightly better tasting antibiotic, and 5 more drops of ear drops.  Then she plays and we attempt to stay awake, we finally put her to bed, Tom plays video games while I write/work/get other crap done, and we collapse into bed ourselves.  We need a vacation...
This was from when she spent an hour throwing up last Thursday.  Feyla was so sweet and tried cuddling with her and at this point was actually kind of laying on Tera.  Poor Tera missed out on some serious close time with her kitty...

Tuesday, February 21, 2012

Update and thank you's

I survived my first day back to work after our very crazy weekend.  I'm exhausted, but I survived.  I did explain to my students what is going on with Tera just so that they know why I've been out more than usual lately and in case anything comes up this week.  I emailed the doctor yesterday about her cough not improving and he said it would probably take a while so I guess we just have to wait it out.  Ughhh... Tomorrow I will take her in for what was supposed to be her one year check up, but instead will just be a checkup for the pneumonia.

She did have a great day back at school and even made it through a half hour of physical therapy (we took it easy today).  But she did have two very big moments in the past few days.  Sunday, while taking her bath in the big tub for the first time, she rolled herself forward to her stomach from sitting (this is happening a little more frequently but still not all the time), pushed herself onto her hands and knees (also improving), and then pushed herself into sitting position! This was the first time she's ever been able to get from any position back into sitting by herself and I was beside myself with excitement.  Then today when I picked her up from school, one of her teachers said she actually saw her transition into sitting from laying down!!!! I can't believe that she's able to finally achieve these more physically demanding milestones, while having pneumonia.  I can't wait until we can see it ourselves. 
Tera's first adventure in the big tub with her new Star Wars bath toys from Auntie Lindsay and Uncle Joshie

I'm still in awe that she was able to make it through her party on Saturday considering how she was feeling; and for that we have several people to thank, both on her part and on ours.  First, a huge thank you needs to go out to my sister Lindsay and her boyfriend Josh.  Lindsay was able to take care of Tera on Friday and on then on Saturday helped me haul all of her stuff around to the doctors trying to figure out what was wrong.  While we were dealing with that mess, Josh was a huge help to Tom at home helping him decorate and get the house ready and picking up the food.  Our day would have been a lot more stressful without all their help.  And an equally huge thank you goes to my in-laws who were on crisis management detail.  They were able to pick up the balloons and cake while I was at the doctor and Tom was dealing with the house and then picked up medication for Tera and brought it back for us.  They also helped us with last minute set up and my mother-in-law went around making sure people filled out their predictions for Tera (she's very tough to argue with).  And speaking of predictions, I'd like to thank my very good friend Heather for suggesting such a personal touch to the party.  I loved the idea of everyone sharing what they think the next year will bring for Tera.  My sister Cassie was also a big help picking up some last minute items and baking her delicious honey-do bars.  She also provided some additional, much needed, emotional support.  I can't thank my brother-in-law Mike enough for taking sooo many wonderful pictures at her party.  We clearly did not have the opportunity and he did a great job.  My mom provided the most help in the week leading up to her party.  She stayed home with Tera last Tuesday so Tom and I didn't have to miss another day of work when she was still sick and checked on both Tera and I everyday last week to see how she was feeling and I was holding up.  She listened to me cry and worry, gave me advice, and reassured me. Of course, I wouldn't have made it through the weekend at all without Tom.  He worried with me, helped put together our list of concerns and questions for the doctor, orchestrated the party preparations, and shared with me those two very sleepless nights.  And I am so very, very thankful to every one of our family and friends who were able to join us.  It was a crazy day but everyone was so understanding of her situation and reminded me once again how lucky Tera is by just being there to celebrate and showering her with so many thoughtful gifts.  We had some very special people pick out some very special and well-thought out gifts and it was just as exciting for me to see what she got!

I'm still feeling so many emotions regarding this past weekend and also the upcoming weekend, but I have to save something for tomorrow...

Monday, February 20, 2012

It's all about survival...

I don't even know where to start with this weekend, so let's start with Thursday night.  Speech therapy on Thursday was going okay until she had about 20 minutes left.  At that point Tera started getting really cranky so Tom tried feeding her.  That wasn't going well and then it got a whole lot worse when she threw up everything she had just eaten and then some.  That was followed by two more episodes of puking (on me both times) and a fever.  This was bad enough by itself, but my sister Lindsay and her boyfriend Josh were due in to O'Hare and then to our house for their first visit since last June and their main purpose for visiting, was passed out on our bed with a 102 degree fever.  Thursday night was fairly uneventful and both Lindsay and Josh got lots of snuggle time with our still slightly sick girl on Friday, but there was no more throwing up during the day so we thought we were out of the woods.  Mind you during this whole fiasco on Thursday, all that kept running through my mind was that either Tera and/or Tom and I would be puking on Saturday while 60 people were at our house for her 1st birthday party.

Friday afternoon I got home from work and my other sister was already there followed shortly by my in laws.  Tera was doing ok at this point, still a bit of a fever and not quite herself, but better than she had been.  We tried giving her some food, she ate some and then threw up.  Then we had to try giving her her antibiotics (for the recurrent sinus infection) and she threw up again.  At this point I was pretty sure it wasn't a stomach bug, but had no idea what it was.  We thought maybe she was having issues with her medicine, but we were just guessing.  Then came Friday night.  She coughed all night and then at 2:30 am we thought she had thrown up again and both of us jumped out of bed to check. She hadn't, but then would only sleep on one of us.  So she slept on Tom for a few hours and then on me for a while, coughing the whole time.  By the time we woke up (or really Tom because I hadn't slept since I took over as the crib) we knew we had to take her to the doctor.  We decided on a plan of attack since we had 60 people coming at 2pm.  Lindsay and I would take her into sick call at the doctor's office, and Tom and Josh would stay home and get things ready for the party. 

After running through the whole very long list of problems with the doctor, he agreed that she should be better after three weeks of antibiotics and ordered blood work and a chest x-ray.  The blood work was done in the office and the chest x-ray could be done at the other office about 10 minutes away.  He assured me he would be on the phone with the radiologist as soon as the x-ray was taken and call me right away.  Tera did really well for the chest x-ray.  They had to strap her in with her arms over her head and do two pictures, but she was a trooper like usual.  True to his word, the doctor called me at the radiologist's office to talk about the results.  The diagnosis? Pneumonia.  I couldn't believe it.  He said it wasn't very serious, just a few pockets of fluid, but that we would be starting a new round of 2 high powered anti-biotics and that if she couldn't keep them down or her symptoms got worse, hospitalization was likely.  I think I handled the situation fairly well.  After all, if it was serious, he wouldn't be telling me to go home, right? So I called Tom and we had to make the decision.  Do we cancel the party or go ahead? We decided that with only a few hours before everyone was to arrive, we would just go on as planned and try and keep her rested and with somebody from the immediate family as much as possible. 

She did great and the party was a success. Tom and Josh had done a great job of decorating and everyone seemed to have a good time.  She played along with her cake, helped me open her gifts, and visited.  She was actually awake far longer than she should have been considering none of us had slept well and she was sick.  Then came Saturday night.  Probably one of the worst, if not the worst night, we've had since she was born.  She started crying at around 11 and then was up, and I mean wide awake, until 5 am.  I was up with her until around 2:30 and then Tom took over and ended up figuring out she just wanted to play.  She had no interest in sleep.  So Sunday morning comes around and we are both like zombies.  We kept things low key Sunday and she did better Sunday night but still coughed most of the night.  This morning Lindsay and Josh packed up their stuff, we all showered, and because why wouldn't this happen, our sewer line backed up and we had to call Roto Rooter.  Over $300 later we have clear pipes again. 

I have to say, I would have thought there would have been a lot more tears on my part this weekend, but I held it together pretty well.  I'm not exactly sure what that means for the next few days as far as my nerves go, but we'll see. 

So that's the run down of my weekend.  I think tomorrow I'll delve a little more into the emotional side of all this and also plan to run down my long list of thank you's for this weekend.  So for those of you who made this weekend, not only possible, but successful and survivable, your thanks are coming tomorrow, I haven't forgotten. 

Wednesday, February 15, 2012

It's almost party time...

Only two more days of work this week...I'm really excited for this weekend because both my out-of-town sisters will be back in town and it's Tera's first birthday party! It really is very difficult for me to understand how an entire year has already passed.  A few weeks ago while talking with my brother-in-law, he said to think about all the things we didn't know a year ago right now, and it's so true.  I mean you can say that about a lot of years, but this one has been pretty rough for our family and we had no idea what was in store for us at this time last year. 

I think that's one of the reasons I'm excited for this weekend. It will be a chance for us to visit with our family and friends and everyone will get to see each other.  Now that so many of us have kids and always seem to be super busy, it's been more difficult to hang out and I miss everyone.  We all knew it would be more difficult to see each other once our lives got more complicated, but it doesn't make it any easier when it seems we're always just "catching up".   The nice part is that we still have reasons to get together, it's just that the reasons are a little different than they were ten years ago.  Where we once were just looking for a reason to go out and might spend an hour debating where exactly to go, we now plan weeks in advance to clear schedules and plan around work and family commitments and nap times. 

Fortunately Tera seems to be on the mend, now we just need to keep her healthy.  About two weeks ago I mentioned to a friend at work that with Tera having a sinus infection at that point, it hopefully eliminated anything else that she'd get sick from before her birthday party.  Apparently I should never utter that sentiment again as she clearly proved my theory wrong. 

I will probably not be posting in the next few days due to the chaos that will be ensuing at our house, but if something suddenly inspires me, I'll be sure to share.  In the meantime, wish me luck with our full house on Saturday and for those of you coming, see you then!

Monday, February 13, 2012

Sleepy girl...

I just want to start by saying thank you to everyone who reached out to me via either post, email, or text to offer me your support.  I cannot begin to explain how grateful I am to have so many special people in my life and it is all of you that help me through times like last night. 

Today was okay.  Tera slept well last night but we decided last night that Tom would stay home with her today and take her to the doctor for her cough.  Fortunately we did because it turns out her sinus infection from 2 weeks ago never really cleared up and is now causing her nasty sounding cough.  So we're on to round 2 of antibiotics and hopefully, they'll kick in quickly.  In the meantime, she's slept almost all day which kind of concerns us for tonight.  She literally slept almost 6 hours straight today and then by the time I got home, barely woke up long enough to drink a bottle, and then spent the next 2 hours dozing off and on, seemingly barely able to stay awake.  We were able to get her medicine and some Motrin in her (because of course her fever is back also) and ended up just putting her to bed at 6:30 because it seemed silly, and futile, to try and keep her awake. 

It's difficult to watch her so uncomfortable and so very apparently sick.  Though she's been sick several times in the past year, she doesn't always appear to be sick and generally acts pretty much the same no matter how she's feeling.  This is one of the reasons it concerns me so much to see her so very much not herself. 

On a more positive note, some of her one year pictures have been posted and I'm so incredibly in love with how they turned out.  I'm so lucky to have such a wonderful friend, someone I'm so very close to, be able to capture Tera in such a beautiful way.  She has always managed to find Tera's best features (mostly her eyes) and highlight them so well.  I look at the pictures and I find myself tearing up (I know, shocking) at her expressions and realizing how much of a personality she's already developed.  I especially love the recreation of some of her newborn pictures because it reminds me how far I've come as a mom and how far we've come as parents and a family.  When those first pictures were taken, I didn't know what lay ahead and now I can say that we're doing it; not without some tears and stress, but we're doing it. 



Sunday, February 12, 2012

Issues

I am not coping well tonight.  Tera was home sick on Friday with, we have no idea what.  She was running a temperature of over 101and super cranky and tired until the Motrin kicked in.  She was also cranky Thursday night, off and on Saturday, and off and on today.  I know I really can't complain because she is normally so easy, but it doesn't make it any easier to handle when I don't know what to do to make her happy.  She's by no means inconsolable, just cranky.  She's also putting up a fight at meal times which is very unlike her.  The seemingly likely culprit? Teeth, we think.  But we can't really get a good look in her mouth to tell and since she doesn't have any yet, we have nothing to compare this to.  But then throw into the mix a nasty, wet sounding cough for most of today and the fact that Tom had to leave to play hockey, leaving me alone with the cranky, tired, coughing little girl, and after already shedding tears once, I'm currently attempting a glass of wine and watching Ya-Ya Sisterhood.  She went to bed about a half hour ago, but I can hear through the monitor that the poor thing is coughing in her sleep.  I just broke down in tears again over the phone to my mom because I feel like my baby is constantly uncomfortable or not feeling well and my heart hurts for her. 

The tears were the result of multiple things. One, I'm a crazy over-emotional wreck most of the time.  Two, we have over 60 people coming to Tera's birthday party next weekend and while I'm normally pretty calm while planning a party, I keep feeling like I'm forgetting something important or that I'll regret not having later.  Mind you, we've done these types of gatherings many times before and they are usually successful, but reason cannot be used in this situation.  I have one sister flying in Thursday night to stay with us and I'm super excited, but keep worrying about whether she and Josh will have stuff to eat and whether I'll remember to tell them everything when they watch Tera on Friday (again, not something I normally stress about, but refer above to lack of reason).  And to add just one more thing to my list, I keep over-thinking the fact that I really should have scheduled the party for at least an hour later to account for Tera's afternoon nap, but didn't and so I'm also worried about the fact that she more than likely won't have an afternoon nap and how that's going to go over. 
And if all that weren't enough, the closer it gets to her actual birthday, the more I keep reliving the morning she was born and I keep feeling all the hurt and pain I felt that day.  And then I acknowledge to myself how ridiculous it is to do that because I know that I've accepted what all of this means, but once again, refer to my previous statements about no reason. 

Enter the tears.

So now I'm going to try and calm myself down by folding some laundry so I can attempt to go back to work tomorrow with a somewhat clear to do list.  That is, clear until we add in all the things we need to try and get done this week before the 60 people descend upon our house to celebrate the birth of my most beautiful little girl.  And who can blame them? All stress aside, I'm really looking forward to the party and seeing my sisters.  I'm also looking forward to being able to share with you the pictures from Tera's photo shoot for her one year pictures by the truly amazing and talented Michelle Meller sometime soon...

Friday, February 10, 2012

Life skills

We take things for granted.  I think it's human nature and I'm sure almost everyone does it in some way or another.  Things like walking, sitting, putting food in your mouth, sitting up after you've been laying down, etc.  You may see where I'm going with this, but these are all things that most of us do without thinking.  I don't know if you can truly appreciate the ability to do these things until you watch a child learn how to do them for the first time.  And you really begin to understand all that it takes to do these things when you watch a child struggle to do them.  When Tera was working on rolling, I first began to understand just how many muscles it takes for a little baby to move their body over to one side.  Then when she was working on sitting I had to understand just how many core muscles it takes to be able to hold yourself up in that position.  One of the things her physical therapist is currently working with her on is transitioning from sitting to laying and vice versa.  She can kind of accidentally get down onto her stomach occasionally, but apparently getting up from laying down is quite a bit harder. 

The other skill I've been truly amazed by in the past few days is watching Tera put food in her mouth.  On several occasions I've found myself just studying how she does it and where the difficulty lies.  At this point they are still working on hand and eye coordination and obviously that is a big factor in this particular skill.  So is being able to even get the food, usually puffs in her case, in her hands.  Currently, the puffs kind of stick to her hands and she shoves her palm to her face and moves it around until she gets the food in (mostly).  What's really interesting is how she pushes it in if it doesn't get in completely the first time.  Sometimes she'll just drag her hand across her face and hope it pushes it in, sometimes she uses her whole arm, sometimes she'll work her tongue back and forth trying to get the rest of it in.

It really is completely amazing to watch what we consider such basic skills, develop in someone from the very start.  It's also so inspiring to watch someone that I know has to work just a little bit harder to do those things.  Since one of my goals with this blog is to inform, I'll explain the difference between low muscle tone and no muscle tone, as it's been explained to me.  In the most basic of descriptions, people with low muscle tone can still be very strong, it's just harder for them to develop the muscles.  I'm constantly amazed by how many parts of the body low muscle tone can affect.  For instance, you may have noticed that Tera has quite the Buddha belly in some of her pictures.  She's had this from day one and it's because her stomach muscles aren't strong enough to hold themselves in yet (not the scientific explanation, but a pretty accurate one).  It actually has improved since birth, but it's still there and it's not at all fat, it's just the shape of her body right now.  Her PT has told us that it will improve as she gets stronger. 

I never wanted to be one of those parents that thinks that everything their kid does is the most amazing thing ever.  But I have to say, though I still don't want to be that person, it really is a special experience to be able to witness these things in any child.  It just happens to be more meaningful when it's your own kid :)
video

Thursday, February 9, 2012

Little Miss Popularity

This morning when I dropped off Tera, I saw her craning her neck to see the teacher in the other classroom.  She absolutely loves both of her teachers.  Every morning she has a big smile for her morning teacher, and when I pick her up she always gives her afternoon teacher that same beautiful smile.  So this morning her teacher (also named Melissa) saw her looking for the other teacher across the hall and told me that Tera likes to read with the other teacher while Melissa is getting the morning food ready.  She also told me that since this other teacher is in the "big kid" room, the big kids love to see Tera and they often bring toys over to her to play with.  I left her school feeling so good about my girl. 

One of the first worries I had when I had time to process her diagnosis, was whether or not she would be teased in school or by other kids.  I read so many things from parents of kids with DS wishing their kids weren't judged by other people and how they just want them to be accepted by other kids.  Granted, Tera is only 11 months old, but I really don't worry about that as much any more.  I know that a lot of the kids we know don't really know that Tera is different.  But I also feel that since they'll have known her since she was a baby, they won't know her as anything different. 

I am not a person who necessarily sees the best in people.  It's not something I'm proud of, but I just don't really trust people until I know them.  So with a slightly cynical perception of people as a whole, you'd think I'd be more concerned about how Tera will be viewed and ultimately treated as she gets older.  But I also get to witness just how good people can be.  As burned out as I am by this school year, I'm still impressed when a student holds a door open for me or offers to help me carry something.  And I'm definitely impressed, and touched, when I see students throughout our building talking with and respecting our special needs students.  I'm not saying they're all the poster people for acceptance and respect, but I have witnessed far more positive interactions, than negative ones.  These are the types of experiences that make me feel more comfortable about Tera's future.  I hear story after story of younger kids going out of their way to make a kid with DS in their class feel included and it's hard to worry about rejection at all.

I know I will shed more than one tear in her lifetime knowing someone has hurt her feelings, intentionally or not.  But I'm also excited for the times when she's asked to join something or be part of a group.  I look forward to the time when the young people who know her now become advocates for other kids with DS.  I will be so proud of the time when someone tells me her accomplishments encouraged them or someone they know.  I will beam when I find out she's inspired someone to do something they didn't think possible.  And I will be in awe once again tomorrow morning when I realize that amazing face is capable of so much and that everyone in her life will be better for having known her. 

Wednesday, February 8, 2012

Some of the fears

Tonight we had our first opportunity to see how well Tera's tubes are doing.  We had an appointment with her audiologists and they were THRILLED with her progress.  She did so much better in her reactions to sounds and it looks like the tubes are doing exactly what we hoped they would.  One more concern we can hopefully check off our list for now. 

I'm sitting here tonight with several ideas going through my head trying to decide how I feel about writing about them.  I'm feeling somewhat reflective tonight, but I wonder how much I have to write about since we've only had one year (almost) of experience under our belts.  I thought about writing about what it's like to raise a child with special needs, but then I realized, I may not really know that yet.  Since I don't know what the future holds yet, I can go through some of the fears I experience, but I won't dwell too long on them since I don't want to leave this with a negative feeling.  The fears I experienced a year ago are a little different from those I feel now.  When we received her diagnosis I worried about the common health issues I'd heard about, if she would be excluded from things because she's different, and if she'd be able to do all the things we'd talked about her doing before we knew.  I do still worry about some of those things, but now I also worry about things I didn't even know about a year ago.  I worry about how we have to change some of our ideas about planning for her future, I worry about health issues I didn't even know about then (which in her case, so far, are minor), I worry about how we balance all the appointments and keep our sanity, I worry about bringing another baby into our family at some point and how that affects Tera and us.  I even worry about how we'd even be capable of taking care of a baby that isn't as easy as Tera has been so far.  The list goes on but I don't need to give myself a complex before going to bed. 

Right now I'm mostly concerned with getting through her birthday.  I'm not trying to be over dramatic here, but I'm a highly emotional person.  This comes as no surprise to many of you who know me and most of all not to my husband, but I am and it makes me crazy most of the time.  The closer we get to her birthday, the more I think about and remember everything about the days leading up to, the day of, and the days following her birth.  I keep thinking about being in the hospital and how fast everything happened and having those dark moments when I was so scared and hurting and then 5 minutes later so incredibly in love with this new little person.  I think about how I strong I felt my connection to Tom grow as we fought through our emotions together and tried like hell to feel like a new family when our newest member was a floor away from us and couldn't come home with us when I left the hospital.  I think about the fact that at this time last year I knew I would the next 6 months with her and now I still have 4 more months before I can be home with her again.  These things go through my head night and day lately and part of me welcomes the memories, and part of me wonders how I deal with the emotions when I know they'll only get stronger as the day gets closer. 

We will be celebrating her birthday with our family and friends in about a week and I'm pretty sure I can handle that part.  Although we seem to have about 60 people coming so I may be overestimating my abilities there too.  But I'm not really sure how I'll sleep the night of February 25th...

Monday, February 6, 2012

The things that Tera does...

I just finished texting Tera's physical therapist to tell her about Tera's successes in pushing herself up to her hands and knees and the response I got reminds of two things.  One, how incredibly important this step is for her, and two, how lucky we are for the therapists we have.  I just can't believe what she's been able to accomplish in one week.  I will be honest, in the past few weeks I've been struck on occasion by little bouts of envy of other parents with babies Tera's age.  If you are one of my very good friends reading this, please know I was so hesitant to even write these words for fear of causing you to second guess sharing milestones with us.  I absolutely love hearing about what all of our friends' kids can do and I never want anyone to feel like they can't/shouldn't share good news about their children's accomplishments.  The hard part for me, is actually somewhat difficult to explain.  Because Tera is really only somewhat delayed, I'm used to her being fairly close to what the expectations are.  But as she's gotten a little older, and the expectations have increased, I've noticed a slightly bigger gap.  This is not unexpected and she's still not terribly delayed, but it's hard not to compare your kid to someone else's, despite your best intentions and reason. 

When I brought this up to Tom last week, he reacted as I thought he might.  It doesn't bother him.  I knew this to be the case because he's always been a person who cared little what other people thought about him and I know he feels the same way as a parent.  He also knows that the professionals (aka her Dream Team of specialists) say she's doing great.  Still, in an effort to reassure me, he came up with a list of milestones most other kids aren't currently reaching (mostly because other people don't know they exist).  So in Tera's list of accomplishments we have the following: planking, which we're actually trying to break her of but is still incredibly hard to do for most other people, having record breaking amounts of pictures taken of her, her own Facebook page with close to 200 friends, goalie kick saves, and yelling louder than most kids I've heard. 

But then last week came and she decided she didn't just want her own list of milestones, she was going to reach the regular ones too.  So she threw in self-feeding and pushing to hands and knees.  I can't tell you how important her therapists find this because it really takes a lot muscles to be able to crawl.  Despite the fact that many people have told us a lot of kids skip crawling and go right to walking, her therapists have been very clear how important the crawling step is and that she will crawl at some point or another.  Now we just wait until she coordinates those little legs and arms into a forward motion.

Saturday, February 4, 2012

Good week, bad week

This has been an interesting week.  I was so tired all week which it turns out, was probably my body's way of telling me a virus was working it's awful way through me.  It hit me hard last night around 5:00 with aches, the chills, and a slightly upset stomach with absolutely no appetite.  This was of course after I had spent the day at home with Tera because she was sick.  Fortunately she was on the mend already and mine didn't really take over until Tom was home.  This is my 4th time being sick since school started and every single time has been on the weekend.  Seeing as how I look forward to my weekends so very much, this has been traumatizing each time.  I'm currently feeling very sore, have a slightly better appetite, and a sore throat.  Could be better, but could be much worse. 

On the plus side, Tera is just cruising through milestones this week.  I already wrote about how she began the self-feeding adventure.  She's now going through puffs at ludicrous speed.  Then today I was able to witness for the first time, her pushing herself up on her hands and knees.  This is HUGE because her therapists, and Tom, have been working really hard with her on this.  I was really excited for this one because I know how important her therapists view it and I can't wait to get a picture or video and send it to them. 

And speaking of videos, one of the milestones probably not making an appearance on the developmental charts, is goal tending.  But as we discovered tonight, she seems to have mastered the kick save and while it seems like it may just be random, pretty much every time Tom was able to get the ball on the side of her body, within her leg's length, she kicked her leg out and saved it.  Witness our great goalie.
video
And then, as if all that weren't enough, Tera got her first hair cut today! Many of you may have seen how her hair tends to fall into what I affectionately refer to as her "Hitler hair" with it coming to a point on the side of her forehead.  No matter how many times I brush it to the side, it inevitably falls straight down and into her eyes so I had my hairdresser trim it up just a bit until the rest of her hair fills in and we can "style" it a little more.  Mostly Tom is still mourning how long it is because it just doesn't work as a mohawk anymore. 


Here's hoping to restful night and waking up to an ache-free body and happier stomach...

Thursday, February 2, 2012

A little on the sappy side...

My head is all over the place right now.  I have about a million things flying through it, not necessarily bad, but all over.  I have been so exhausted this week and come to find out today that because Tera is sick again, I'm staying home with her tomorrow.  Is it bad that I'm not upset I have to stay home? I certainly don't want her to be sick.  The poor kid is both congested and has a nose that rivals Niagra Falls at times and now has itchy, watery eyes because she managed to transfer the bacteria from her sinuses, into her eyes.  She's quite talented my daughter is.  So no I don't want her to be sick.  But despite the fact that my kids at school really have been pretty good this week, I'm just exhausted and my tension headaches have made a triumphant return after a rather long hiatus.  I have things I need to get done at home, I have things I need to get done at work, and now I'll be home, but I have grading to attempt to get done.  And the conflict continues...

And my workouts this week have been, well, they haven't been at all.  It was another one of those weeks where life got in the way of my workouts but this week I have to be honest, I didn't mind all that much.  I know that working out can make you feel better during these times, but when you're so tired you can't stay awake, forcing yourself to the gym in an already busy week is damn near impossible. 

So I sit here regretting my lack of workouts, thinking about my sick kid, and my fabulous husband sits across from me trying once again to convince me to write about how cute he is.  Yes that's right, whenever I'm trying to decide what to write, and even when I know what I want to write about, Tom's first suggestion is share with the world how adorable he is.  I have to say, he is pretty cute.  This is may be the point where you want to stop reading if you're feeling nauseous already.  But he's been very supportive of my endeavor and so I feel I should honor his wishes.  My husband has this child-like quality that, while at times can be trying, also is one of the things that keeps me sane.  He has a face for every occasion and after 20 years, he still makes me laugh like no one else can.  He truly is a cutie and it's not hard to figure out how my daughter ended up with a face of absolute sweetness. 

So if you've stayed with me, I appreciate it.  I'll try to save any other ridiculously sappy, over the top posts for a much later date. 


Wednesday, February 1, 2012

Congestion time again

Today was just ugggghhhhh.  It wasn't a particularly bad day, but every day lately has just seemed long, exhausting, and painful in some way.  My headaches are back with a vengeance and I really need to get in to see my chiropractor.  Unfortunately, I need to schedule my appointments around Tera's many therapies and her doctor appointments.  At this point though I'm pretty sure I'm just going to have to make it work next week somehow or the Excedrin is going to be flowing like my own blood through my system. 

Then around 11 am I got a text from Tom.  He tells me it's not too serious, but that Tera's school called him and to give him a call when I get a chance.  I particularly enjoyed the "it's not too serious" part.  But I didn't freak out and run out of class panicking.  When I did call him I found out apparently she'd had a very rough morning.  Apparently each day this week her mornings have been worse and worse as far as her congestion and overall comfort level were concerned.  This is not unusual for her, but what is unusual is that it hasn't been starting until mid morning.  When she's woken up the past few mornings she really hasn't been that bad.  But apparently as the morning progresses, she gets worse and it makes her bottle feedings miserable and she's just generally uncomfortable.  Today was the worst of the three days so far when her extreme congestion led to a choking incident that scared both her and her teacher.  So they called Tom to let him know about that and that she was just not herself.  They didn't need us to pick her up so after talking to her teacher myself, I just decided I would pick her up right after I got out of school instead of going to the gym.  This was good and bad because I needed to go the gym, but I had no interest or energy to make it there anyway. 

The strangest part of this all was that by the time I picked her up, she was completely fine.  Same as yesterday.  She was also fine all night, just like yesterday.  So I'm completely perplexed as to how she can wake up fine, get super congested as the morning goes on, then be fine again by the afternoon and be fine all night.  Any ideas anyone? We've been running her cool mist humidifier and tried cranking it up a little more tonight so we'll see what happens tomorrow. 

And on top of all that fun, Tom started working on our taxes and somehow having a kid still doesn't help us all that much.  How is that even possible? She's pretty freakin' expensive!

I did however manage to get one load of laundry done, which I've been trying to get done since Sunday.  Success!