Thursday, August 29, 2013

Back to reality...

I'm back at work.  It's been four days and although I feel back in some kind of routine, I miss Tera like crazy.  I miss the little things mostly.

I miss going in to her room in the morning and playing our little hide-and-seek game.  I miss being able to give her breakfast (even when she frustrated the hell out of me by not eating anything).  I miss knowing how her day was because I was there with her.  I miss all the kisses and hugs I can give and get during the day.

I don't like the adjustment period she has when she gets home.  She can be kind of cranky, she's often tired and/or hungry.  And most of our nights are full of things we have to get done (lunches, bath, brushing teeth, nebulizer, etc).  In the mornings, Tom has to wake her up to get her medicine in before she goes to school.  Getting her dressed when she's not ready can be a struggle.  The really hard part is when she wants to play, but we have to finish getting ready to go.  I hate not being able to just let her be herself and all her craziness.

All that being said, two days in, my 11th school year is starting off rather well.  I haven't lost hope yet and after a modification of my first day intro, my students have all been very respectful and overall pleasant.  I'm looking forward to a great year.

And finally, to share the results of Tera's tests from last week.  Her kidney test came back negative for reflux, so that's really good.  They did find a possible defect at the junction of her urethra and kidney.  It might be residual stuff (very technical term on my part) from her infection or the antibiotics so they're going to recheck her in six months.  The doctor said if it is a defect, it's not causing any issues yet so we'll just have to wait and see what happens.  This whole going in for one problem and finding another is not exactly what I had in mind, but we'll deal with whatever happens, as always.  On the plus side, the ENT said her ears look good for now so we don't need to do new tubes yet.  She'll also have that rechecked in six months.

Right now I'm looking forward to a great weekend with Tom, Tera, and my sisters and nieces.   More posts next week!

Thursday, August 15, 2013

Resilience

I spent much of the time I was taking Tera for a walk today to get her to fall asleep thinking about the best word to describe what I'm thinking.  So far that's what I've come up with: resilience.

This morning I had to take Tera in for an upper GI as the first of two procedures to figure out if she has acid reflux, a food allergy, or something else.  She couldn't eat or drink anything after midnight which fortunately works out right now because she hasn't been the best breakfast eater lately.  Now, I've had an upper GI and I remember having to drink the barium so they could do the x-ray and see everything.  I wasn't looking forward to this appointment, but I wasn't dreading it like I am the ultrasound and VCUG (not sure what that stands for) to find out if she has kidney reflux next Tuesday.

I also planned to have them to do a spinal x-ray to see if she has Atlantoaxial Instability (AAI) which is common in kids with DS.  Here is a link for more information on it.  Basically her pediatrician recommended we get one before she joined any type of athletic activity.  Since we were already going to be in Radiology, I figured I would knock two things out (by the way, the x-ray showed her spine looks completely normal right now).

They took us back for the spinal x-ray first and despite the fact that they strapped down her legs, arms, and head, she did rather well; no crying at all.  Then they called us back for the upper GI.  When we got there they told me that the radiologist wanted to do two more images for her spinal x-ray to make sure they got all the best views.  So they took her back down to the other room, took two more images, she did great, and then we went back to the room for the upper GI.  I did wonder how they were going to get her to drink the barium, but I figured it was pediatric radiology and they were used to dealing with kids.  The radiologist asked if she should flavor the barium with chocolate and if she could just drink from her sippy cup.  I said that sounded great.  So they strapped her in, her legs and head this time so her arms could be free, and then moved a large screen over her leaving little space between her and it.  She was supposed to drink the stuff while they were taking the images so they could watch for reflux.  By this time, Tera was getting rather upset, having been strapped down already and now she had this big screen over her and I was wanting her to drink.  I figured out very quickly that the barium mixture was too thick for her sippy cup so we tried switching to a straw.  But by this time she was very upset and wanted nothing to do with it.  I tried unsuccessfully several more times before the radiologist admitted it wasn't going to work and the only other alternative was to put a tube up her nose down to her stomach and inject the barium that way.  

I have watched my daughter go through many things in her almost 30 months of life.  I have seen her with IV's, wires, and an NG tube in her nose when she was one day old just so she would eat.  I have held her through numerous blood draws so they can check her thyroid.  I have held her through shots.  I have held her still through many chest x-rays.  I have held her down for three catheters.  I have held her through unsuccessful attempts at inserting an IV.  I have always tried to be strong for those things.  She's little and doesn't understand anything other than it hurts or it's uncomfortable so I try not to make her more upset by being upset myself.  But there are times when as a parent, your heart hurts more than you can imagine to watch your child go through something and getting upset is just inevitable.  

I watched them put the tube into her nose, as she screamed and cried and because of the screen over her and the already three people involved in the process beside me, I couldn't really hold her this time.  All I could do was stand close and tell her that mommy was there right next to her.  They had to insert three very, very large vials of barium into the tube all while turning her in various ways so the radiologist could see what was going on.  And I have to credit them, they were great with her.  They were as quick as possible and it wasn't their fault it had to be done this way.  But I started losing it.  I longed and longed for months to hear Tera say mama and now that she can, I can't describe the pain I feel when she's crying it and I can't do anything to make her feel better.  So there's my little girl, strapped in, her arms secured next to her head, three adults maneuvering her, and she's crying over and over, "mama, dada, mama, dada".  I cried.  I told myself over and over as it was happening that I had to be strong for her, that I could cry later, but it wasn't working.  Hell, I'm crying as I write this just thinking about it.  When it was over, I picked her up as quick as I could and she calmed down. 

Where I'm going with all of this is the time right after we left the room.  My sweet girl that had just been traumatized, waved to the technicians and the radiologist.  We got out to the waiting area, and Tera waved to my mother-in-law who fortunately had come with us.  We got her out to the lobby so she could have some food finally and she was being her silly self again and waving to anybody who walked by.  

Many people, adults and children, would hate doctors after having been to as many as she has.  I can't even begin to guess how many times she's been seen by a doctor since she was born.  I've had people ask if she gets upset when we go into doctor offices and I tell them she's never been fazed.  She just walks in and acts like it's the first time and that nothing bad has ever happened to her in one.  So I think resilience is the word I'm looking for because I can't describe how else she could have experienced and gone through so much, and still act like none of it has happened.  It hasn't made her an irritable kid, or a cranky kid, or an angry kid, or even a scared kid.  She's the bravest person I know; way more than me I can promise you that.  Because I do remember all those things and it does upset me when we walk into offices where I know something painful or uncomfortable will happen to her.  I've never read about resilience being a by-product of DS, but I'm pretty sure many other parents in our situation would agree that it is.  Once again she has proven to be my little hero.  

Monday, August 12, 2013

Working through our summer bucket list

This summer Tom and I created a type of bucket list of things we wanted to do with Tera.  We've found out the hard way that if we just wait for available time to happen and then try and think of something to do, it never quite works out.  So we created a list of places we've either heard about or have been wanting to go to as Tera is old enough.  We either try and put them on our calendar or when an upcoming weekend looks to have some free time, we try and figure out something on the list that might make sense.  We've both had to make the decision that even though we also both have our own "to-do" lists of home projects, our time as a family is more valuable and more important.  Despite the fact that we don't have much free time, there will be time to get "chores" done, but we don't want to look back on a weekend, a month, or a year and regret that we didn't do more fun things as a family.

Last week was a stressful beginning because of Tera's cardiologist appointment, her six month review, and then the headache of having more scheduling to do and trying to figure out when it's all going to happen.  But as the week went on, it got a little easier.  Tom was home with me on Tuesday so he could work on his car and I finished up a few house projects.  Wednesday my mom took Tera for the day so she could visit with Tera and I went to my sister's house to help her with my three week old twin nieces.  It was a really nice day with my sister and nieces as I mostly got to snuggle with them.  Then Thursday I worked around the house in the morning and then actually made time for myself and went to see my chiropractor for a massage and then got a pedicure before we headed to my in law's house for dinner.

Then there was Friday.  Tom's favorite day of the whole year is ComiCon (for those not familiar with the term, it is a comic book convention).  He's never been a huge comic book reader, but a large part of the convention is vendors selling collectibles of various types and he is a big fan of that.  Yes, my husband is an avid collector of Star Wars memorabilia and is just completely in his element at this event.  I've gone with him every year that he's gone and since Tera's birth, we've also brought her with us.  He looks forward to the event every year and literally starts counting down the days as it approaches.  It's not something on our list, but it's definitely a tradition and one that I hope Tera can start to enjoy a little more each year to give her something to bond with Daddy over.  She was of course appropriately dressed in her R2D2 dress.

We had already decided that as long as the weather cooperated, we would try and go to the Chicago Botanic Gardens on Saturday morning.  Fortunately we were able to spend a really nice morning seeing all the beautiful flowers and grounds there and Tera was able to run around a little.  We were also able to get some really nice pictures and it's something we'd really like to bring her back to soon.

At the end of this little excursion I took Tera to the bathroom before we left and Tom was waiting outside for us. When we came out he told me Tera had been "spotted" again.  Apparently a family that we had passed on our way out had seen Tera and while I was in the bathroom with her, the dad approached Tom and asked him if Tera had DS, which Tom confirmed, and he then explained that his wife is due with their second child and the baby has DS.  Tom kind of briefly explained what it's entailed so far, like therapies, specialists, and medical issues (none too negatively).  The other dad said they were already aware of the therapy situation and that their baby already has a confirmed heart condition.  They chatted briefly and that was the end of it, but it was Tom's first solo conversation and it's just still a little surprising every time it happens.

These next two weeks are full of appointments and all the preparations and meetings I have to get ready to go back to work.  My main goal is to try and take one day at a time and enjoy the time I have left with Tera.  Each day will tell how successfully I'm able to do that.

By the way, anyone who has fun things to do as a family (both indoors or outdoors) and from now through the rest of the year in the Chicagoland area, feel free to share. We'd love to add to our list!

Wednesday, August 7, 2013

Tera's Six Month EI Review

In addition to Tera's cardiologist visit on Monday, we also had her six month Early Intervention review.  During these meetings all her therapists along with her service coordinator meet with us at our house to see where Tera is in meeting the goals we set for her at her annual meeting and whether anything needs to be changed or added.  

I have read about so many moms who dread these meetings, and leave them feeling disappointed and discouraged about their child's progress.  I completely understand how many people can feel that way; we often leave doctor's appointments feeling the same thing.  Fortunately I can't think of a meeting we've had yet that ended with me feeling sad or discouraged.  I will admit that I often times feel very overwhelmed after they're over because a part of the meeting is talking about new strategies to help Tera meet her goals.  It's also about revisiting some of the already existing strategies and this is sometimes when I realize we never really worked on a particular strategy and I feel guilty for not trying it.  

I think a big part of how these meetings go is how the therapists and the coordinator work together and what their relationship with the child is.  In our case, we absolutely love all of her therapists and her coordinator.  We always feel that they are as vested in her progress and success as we are.  That sometimes surprises me and then I remember the feeling I get when one of my students performs the way I know and hope they can.  From the parent's perspective it's just very reassuring to know how much they care about her as a child and us as a family.  It will be very difficult to leave this team behind when Tera transitions to Early Childhood; but that's for another post.  

At this particular meeting we talked about what resources we receive and use as a family to help Tera.  At this point in her process, we are starting to prepare for her transition to Early Childhood in February after she turns three. We discussed what the order of events would be and what we need to do to be ready for those meetings. I've already been in contact with the Director of Special Services for our school district and she knows that Tera's name will be coming across her desk. In either October or November, we will meet with the teachers and evaluators at SEDOL (the Special Education District of Lake County) to see the facilities and get an understanding of who everyone is.  Then they'll schedule all of her evaluations to see what services she qualifies for, and then right before her 3rd birthday we'll sit down with her current team and her new team to write her IEP (Individualized Education Plan).

After that we moved onto her other goals.  We had wanted Tera to begin to imitate simple sounds and words and use signs to communicate her wants and needs.  We all agreed that she has really made huge strides in this area.  Her receptive language has increased dramatically (what she can understand) and her expressive language is starting to begin verbally and increase by signing.  She definitely imitates readily.  We adapted this to say she will continue to increase her spoken words and continue the use of signing.

Her next goal basically had to do with her constant throwing of things.  While it's definitely still a problem, we all agree that it has gotten somewhat better.

Finally we had wanted Tera to begin walking up and down stairs with the use of a railing only and begin to kick, throw, and catch a ball.  We can happily say that she is definitely going down the stairs holding the railing and while we don't feel comfortable having her do it on her own completely yet, she's doing very well.  Next we'll start to work on walking up as well.  She is beginning to kick a ball when asked and can throw and catch (when you're close) pretty well.

In summary, everyone has been very pleased by her progress. We all think that she's shown huge improvements in her behavior and attitude since being moved up to the next classroom at daycare and hope that those improvements continue.  The tricky part to her continued success in all areas is dealing with her health issues.  Obviously when she's sick most strategies that we try to incorporate to help with her various goals go out the window.  Sometimes areas she was making gains in slow down and many times after finally figuring out a way to regularly incorporate something, we have to figure it out all over again when she gets sick and then healthy again.  

So we'll continue to work on what we can while we can and hopefully in the next month or so I'll be able to share that her spoken vocabulary has expanded beyond mama (which never gets old by the way), dada, ay yay yay, and cheese.  

Tuesday, August 6, 2013

Cardiology update

Yesterday we had a busy day which included a check up with Tera's cardiologist and then her six month Early Intervention review.  For those of you not familiar with the heart complications that go along with DS, here's an example:  when we meet new families with a child with DS, one of the very first questions to go between parents is, "How is their heart?" and we're not referring to their level of compassion.  Some type of heart defect is almost inevitable with DS.

On the evening of the day Tera was born, many hours after her diagnosis had been delivered and a subsequent EKG had been done, the nurse asked us if we wanted them to take her to the nursery for a few hours so that we could get some sleep after what had been quite a difficult and emotional day.  We decided that it would be probably be good if we could get a little sleep and so they wheeled her off.  We had no idea at that time it would be the last time we would have her in my room and without tubes and wires for the next seven days.  They got the results of her EKG while she was in the nursery and the neonatologist came to my room to inform us that Tera had been transferred to the NICU as they had discovered she had some heart defects (along with some signs of possibly having contracted strep from me during delivery).  Having received her diagnosis was one thing, but then they were telling us that one the most delicate and crucial organs in her tiny little body, was not healthy.  I believe they also gave us the details of what was wrong, but that may have been the next morning, I'm don't completely remember anymore.  Either way, we were told that she had three holes in her heart, one that was fairly large and could require surgery.  Just the thought of my less than one day old tiny baby girl having to have heart surgery made my own heart stop.  The next day we were told that she had been given a cardiologist through Children's Memorial (and who she still sees and we really like) that was going to be monitoring her remotely while she was in the NICU.  Fortunately, somehow, the biggest and most risky of the holes closed rather quickly and on its own.

So upon discharge we had to make a follow up appointment with the cardiologist and he would let us know what the next steps were.  At our first visit he told us she had an ASD and VSD, but that neither required immediate surgery; we could wait and see if they would close on their own.  But in order for this happen, she had to grow.  He wanted at least a pound a month to help ensure the closure of the holes.  For an infant that was able to eat well that might not have been such a challenge.  But due to her low tone and all the other things associated with DS, she was a slow eater that would often fall asleep before finishing; so we were constantly checking her weight and worried about her food intake.  Most months she was right around a pound and around one year, he saw no more evidence of the ASD.  Since then she's been going in for check ups about every six months and while the VSD hasn't closed, it's been progressing the way he wanted.  For as worried as we were at the beginning, since then we've pretty much just been able to tell people that yes she had two holes, but that one closed and the other was just being monitored; no medication or surgery.  He told us that it would be a slow process and really unless it hadn't closed by the time she was an adult, he would just monitor it.

When Tom took her in for her last appointment he didn't do the ultrasound, just the EKG.  This time he did the ultrasound, during which he apparently saw some muscle developing around the hole that he doesn't want to form.  He said that it's a risk with letting the hole close on its own and it doesn't mean anything yet, but that he has to watch it more closely.  He'll see her again in six months and told me there's nothing he or I can do in the meantime.  So then I asked the question of what will happen if the muscle continues to grow; at which point I had to face reality again, because the answer is that he would have go in and close the hole and remove the muscle.  I won't say I panicked or cried or worried even.  I just let it slowly sink in that the idea of heart surgery had kind of slowly slid from my mind with every good check up she had prior, and now we have to deal with the fact that the possibility of heart surgery is still out there.

I've experienced some stress in the past week or so in trying to get a handle on all of Tera's appointments and then trying to schedule two more procedures.  There are many times when it's incredibly overwhelming and I get mad and worried and upset and then I have to suck it up, take care of it and and move on.  I still always am cognizant of the fact that her issues could be so much worse.  And yet at the same time, it seems like every month or every couple months we're adding a new specialist to the list because yet another problem has surfaced.  Yesterday I finally was able to schedule the procedure to see if she has kidney reflux and the procedure to see if she has acid reflux.  And of course they couldn't get her in for both on the same day.  Then I have to wait until after her next ENT appointment to see how her ears are doing so he can decide if he's going to put another set of tubes in at the same time that the gastrointerologist is going in to do an upper endoscopy to once again test for acid reflux.  And for those procedures she'll have to be put under and we'll have to get clearance from her pulmonologist and cardiologist and she'll have to go in for a pre-op exam with her pediatrician.  And that's assuming she can stay healthy for that to happen, which given the past 48 hours, is questionable even now.

Plus side? No surgeries yet.  Down side? Something is inevitable and I just somehow have to make it all happen.

Tomorrow I'll give the update on what happened during her six month review which is much more positive :)

Thursday, August 1, 2013

In honor of a sweet boy

From a while back taken by my very close and very talented
friend when Tera turned one.  It's one of my favorite pictures of her and today I wanted to include something truly beautiful.
Tonight, like so many nights, there are many things on my list that I could be doing.  But I need to take the time tonight to honor a little boy who has made me reflect on the frailty of life so many times in the past year.  One year ago today a boy who was not much older than Tera is now passed away in the same hospital and on the same day that Tera was getting her second set of tubes.  Just a few days earlier I had sent his mom a message, knowing we would be in the same hospital while they were there, asking if they wanted me to bring them anything.  It wasn't until the next day or so after we were there that I found out he hadn't made it.  I'm fairly certain that I would feel the sadness and empathy I've experienced for any number of other situations involving kids; especially kids around Tera's age and that have DS.  But it's the circumstances of it that seem to have made it hit home more.  He and his moms attended a few of the Gigi's Playhouses and though I never met him personally, he has definitely impacted my life.  I cried at the Gigi's Gala this year when they showed a video honoring him and I cried last week when his mom posted an event they were having on Facebook to honor him.  She posted suggestions on ways to honor his memory and so we've ordered many packets of milkweed seeds to attract butterflies (they're calling the event Remembering Elijah's Butterfly Effect) and I
stayed in Tera's room until she fell asleep just admiring all that is perfect about her.  We will spend this weekend enjoying our time as a family and with our family, making sure that we never lose sight of what is truly important in life.  But as his parents are being positive about today, so will I.  In another attempt to honor his memory, I want to share some of Tera's latest accomplishments to show you all what she can do in spite Down Syndrome.

On Monday we will have Tera's six month review during which all her therapists discuss how far she's come since her last meeting and where she is in the process of meeting the goals we set up for this year.  In preparing for this meeting, two of her therapists asked that I compile a list of words that Tera knows.  This list includes words she verbalizes, sounds/expressions she makes, and words she can sign.  We are all incredibly proud of her list and so I want to share it.

Verbal:
Cheese
Mama
Dada
Yia Yia
Papou
puppy sound
cow sound
sheep sound
elephant sound
fish sound
lion sound
pig sound
snake sound
monkey sound
hi

Gestures/expressions:
Hmmm
Shhh
Ooohhh
ah ya yay
tickle 
kaboom

Signs:
banana
milk
water
please
thank you
more
kitty
bird
horse
fish
music
sleep
brush teeth
baby
puppy
shoes
socks
star
hurt
phone
wash
cracker
bunny
read/book
kangaroo
cookie
yes
bear
bye bye
ball
diaper
all done
help
hi
itsy bitsy spider
no
up
uh-oh
give me
me
car
Harper (her friend)
hat
(we know there are more that we can't remember)

Next up on things I'm proud of is her transition to the next classroom at daycare.  All of her therapists, and Tom and I, thought and hoped that when she got moved up many of her behavior issues (pushing, biting, not following directions) would dissipate.  And I'm happy to say that they have.  For the past few weeks her teacher has told us how happy she is with Tera's transition and how so many of the things they noticed before are not even issues anymore.  She seems calmer, doesn't need her weighted vest, and is following directions incredibly well.  

On the potty training front, I'm not going to give a whole lot of details.  Let's just say it's an area I didn't expect that we'd be working on already, but with some limitations she's doing very well.  Some of her fine motor skills and the low tone make it difficult for it to be something she can do completely on her own in the near future, but we are incredibly proud of her progress and willingness to work on it.  

She's also been working on going down the stairs while holding the railing with one hand and no support from us.  She does very well and is always eager to do it on her own.  She takes her time and only really has issues when her shoes stick to the floor when she's sliding them forward to take the next step (or when she's not wearing shoes and her pants are inevitably too long).  This is definitely one of those skills where we're so proud to see her doing it herself, but at the same time we have to come to grips that it's one more thing she can do without us.  There is no part of holding that little girl's hand that I want to give up, but to see her meeting one of her IFSP (Individual Family Service Plan) goals is worth it I suppose.  

There are probably numerous other things we're very proud of right now, but those are the big ones and I feel they capture just what a two and a half year old with Down Syndrome is capable of.  Add to that the incredible sweetness and love that she exhibits on a daily basis, how caring she is, and how her smile can change your day and I will say that she is also capable of changing the world.  

And now because I'm feeling inspired and sentimental, here are some quotes I find particularly relevant.
She believed she could. So she did!Inspirational Image :: Motherhood is about... From Life After NICUdaughter
                                                   so true...need to remember this always always always.