They Didn’t Have To Do That (and I’m So Glad They Did)

“Kathleen?  Do you have any suggestions on how to get your daughter to focus?”

My heart sank.  The question was coming from from the friendly face of the children’s ministry director at our church, as she peeked into the room where I was teaching Sunday School.  It wasn’t an odd question – I knew what must be happening in the room down the hall.  My seven year old, who has a rare disability known as Trisomy 12p (too rare to have a jazzy name, I suppose) was yelling.  Or refusing to follow directions.  Or taking things from other children.  Hopefully not hitting.

 

“Give her a job to do that she can be successful at and lets her move around a bit.  Or I can come get her.”

 

“Oh, no need.” she responded.

 

I finished class with a smile on the outside and tears on the inside.  There is always a flurry of emotions when things like this happen.  Frustration, because she won’t act “normal.”  Sadness, because I know she acts this way when she’s uncomfortable and doesn’t know how to handle her emotions.  Guilt, because I should have taught her better.  And insecurity, because I’m wondering what those teachers are thinking – do they feel slighted, because they have the problem child in their class?  Are they annoyed with me, that I can’t make her behave?

 

After class my husband and I pick her up, and I thank and apologize, thank and apologize, thank and apologize.  I wonder if next week will be better.  I wonder how many bad weeks we can have before I’ll have to pull her out of the class.

 

Next week, one of Teagan’s teachers approaches me, and I dread hearing what is coming… 

They’ve come up with a solution.  One of them has a friend who is a special education teacher, and she is going to start coming to Sunday school to help Teagan.  

 

This woman is coming to a church she doesn’t go to every Sunday.  To help my daughter. 

 

Think about that.  No one asked them to figure this out, they could have said “not my problem.”  Out of the goodness of their hearts, they figured out a way for my daughter to stay a part of the class.

 

I stammered a thank you, and it wasn’t until we were on our way home that I became overwhelmed with their kindness.  I emailed the director a thank you and asked her to forward it to her teachers, and got this in reply:

 

“Please don’t ever feel bad.  She is no different than all the other children.  She is unique just as much as any of the others.  Each one acts differently for different reasons and we’re always trying to figure out what works best for each one.”  

 

The life of a special needs parent can be pretty lonely.  Thanks to ladies like these, it’s a little less so.  They didn’t have to do that.  I’m so glad they did.

An Act of Go…oogle

Every now and then, I’ll get a notification from WordPress that someone has commented on my blog.  Most of the time, it is a comment on one breakfast recipe I posted like two years ago (everyone likes it, except for one lady who told me it was a waste of time and money – oops) or else this one on wine and cheese, thanks to Pinterest.  But the comment I want to talk about today was different.

It was from a man named Ruslan who lives in Russia.  His newborn baby daughter had been diagnosed Trisomy 12p, and he was trying to find information.  I’ve mentioned the rarity of Teagan’s diagnosis before, and the lack of easily accessible information – those of you well versed in SEO will know that for my itty bitty blog to show up in search results, there must REALLY not be anything out there.

Anyway – in his comment, Ruslan stated his situation and asked if I would please email him, as he and his wife had been unable to find much information or guidance in Russia.  Surprisingly, although I was thrilled to get his comment, I was nervous about writing back.  I long to bond with other parents in my situation, but now that the opportunity was staring me in the face, I kind of froze.  What do I tell him?  How do I portray the difficult road that is our life, coupled with the joy Teagan brings me every single day?  How do I offer him support from this far away, and when I know nothing about available resources?  What if I can’t help him?

When I did email him back, we shared the stories of our daughters and other children.  We lamented living in places where it snows in April.  Thankfully his English is better than my Russian 😉  My heart went out to him when he mentioned that he and his wife felt they were on their own because they couldn’t find many resources or anyone who could educate them:

“The geneticist whom we approached for consultation couldn’t even give us a hint about this syndrome. He said in his career we were the only family with such syndrome in Russia. And this guy is a super experienced geneticist in one of the best clinics in Russia. I guess we’ll need to be on our own now.”

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I remember all too well those first, super difficult days, when no one will give you a straight answer about what is to be.  And when you feel so alone because your teeny tiny baby has some crazy condition called Trisomy 12p and WHAT the hell is that?!  Hard to believe I was first asking myself those questions two and a half years ago.  Feels so far away, yet somehow like only yesterday.

Different countries, similar weather patterns??

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Teagan and Ruslan’s daughter have some similarities rooted in their trisomies, and some differences.  They both had a hard time sleeping (even more than what you’d expect from a new baby) and eating, as well as low muscle tone, which leads to issues with basically anything muscle related – delayed rolling, crawling, walking, etc.; this is also the reason for Teagan’s two lazy eye surgeries.  So far Ruslan’s daughter is seizure free – join me in crossing your fingers for them!  They had some success with a massage based therapy, which we heard of back when we were first diagnosed but didn’t try.  They are still in the early phases of tests and scans and discovering what all has been affected.  Luckily, one thing is for sure – they both have parents who are working hard to give them the best life possible.

I told him about Teagan’s history.  How we tried to make up for the low tone with muscle strength through physical therapy.  About epilepsy and organ tests and all the progress she has made.  And mostly, I tried to be supportive – I tried to be the friend I wished I had when I was new to this situation.

When I asked Ruslan if I could share this story on my blog, he pegged my thoughts exactly:

“I don’t mind if you write about us on your blog.  I think people who might have faced similar problems should know that they are not alone in this world and that there are a lot of other stories of real people who are lucky to overcome the challenges you and us have faced.”

Word my friend.  Two and a half years after our diagnosis, our family has finally found a friend who knows how we feel.  They are on the other side of the world and speak a different language.  All it took, was an act of Google.

Teagan’s Two and a Half Year Assessment

We did Teag’s six month assessment a little early this time around, in preparation for baby.  Her whole crew came out to our house – six people from the school district!  Her PT Melanie and her intern, OT Nicole, ST Jacque, teacher Kristin and service coordinator Dedra.  Plus Joel and myself.  TT is always happy to have an audience.

The whole crew!

At the end of 2013 I was pretty frustrated, feeling like our progress had plateaued – but 2014 has been very exciting.  We are super pumped about the goals we have for the next six months!

Communication
T’s progress in this area has been growing a lot over the last six weeks.  Between signing and noises, she is able to tell us what she wants quite a bit – not as much as most 2 and-almost-a-half year olds, but her progress is a good sign.  She understands a ton, and knows signs for milk, go, up, down, open, help, more, on, all done, drink, eat and me/mine.  She understands a lot, follows directions, and answers simple questions – if you want to know what the sheep, cow, lion, snake or monkey says, Teagan is your gal!  No help on the fox though.  Or bobcat, sorry Grandpa Lorin.  She’ll also put an “mmm” sound with the milk or more sign, makes a p sound when she sees a puppy, and a “ba ba” for baby or bubbles.  Our next step here is completing words – so bay-bee for baby instead of ba ba – and  word combinations.  We’re getting a bit of this already; this morning I got a “ma ba” out of her for more bubbles, and at daycare she will do the signs for me and down when she wants to go downstairs.  Our measureable goal for 6 months is for her to say 5 different words (the actual word, not just part of it) and to use 75 words or signs daily.

We’ve also found a new, private speech therapist to use.  Her name is Amy and she comes to our house – she is very assertive, and makes Teagan work, which I love.  We’ve only had two sessions with her, and we’re super excited to see where we are by the end of the summer!  So for now, we have stopped working with Children’s.

Occupational
We’re continuing to work on eating.  It has gotten better, but meal time is still probably the most stressful part of the day.  She’s doing stellar with the sippy cup, now our goal is to get her to use an open cup or a straw.  She’s doing relatively well with a fork and can pierce some foods – although it would work better if she would look at her food, instead of us, when trying to do this ;-).  Our six month goals here are for her to feed herself 2/3 of meal – which she does, if you consider how little she actually cares to eat (according to Grandma Ann, she gets that from her daddy).  Also to pierce 5 pieces of food in a row, and to use open or straw cup to drink 2 ounces of liquid at least twice a day.

T is also doing a LOT of drawing now, which Nicole is really excited about.  She’ll imitate vertical and horizontal lines, as well as dots, which is good for pre-writing skills.

Teagie at her coloring table

Physical
T gets around pretty well – she is a pro at going up and down the stairs, as long as she can use the bars on the railing.  Our next steps here are doing the stars facing forward, vs. sideways as she does it now, and jumping.  She’ll start preschool when she is three, so we want her to be all set to move around independently there.  Also, she is working on catching a ball – she’s made some great progress here, thanks to her buddy Levi at daycare 🙂  Maybe he can teach her mom to catch a ball as well.

Cognition
We’ve been working a lot on play/learning toys – shapes in sorters, puzzles, stacking, identifying pictures.  Kirstin would like to see her expand her problem solving skills.  Our six month goals are for her to be able to seperate toys during pick-up time, and bringing things she needs help with to us.  She does this a bit – especially when she gets into the cupboard and finds a package of mini-muffins.  We also want to see her identifying up to three different pictures of people, animals or objects in books and pictures.

Otherwise, life in the Petersen household has been spent watching Cyclone basketball, moving Teagan to her new room, and preparing for baby sister!

Big girl room!

Teagan is doing swim lessons, which she continues to love, with Daddy this time around.

Can’t wait to see where we are come the next six month assessment, especially now that we are working with the new speech therapist.  And can’t wait to see what TT thinks of being a big sister!!!

Teagie’s progress – February Round-Up

February is drawing to a close and we are continuing a very exciting 2014 (well, when things like using a fork and saying “love” make your life exciting).  Giving myself major props for doing this on February 28th!  😉

Since the 2^nd baby girl Petersen will be here in a month and a half (YIKES!!) T’s PT Melanie really wants her to be more independent when it comes to using stairs, as I will soon have my arms more full than usual.  So we’ve been working on that really hard, and I’m proud to say T can go down stairs on her belly independently (she’s been able to crawl up for quite a while now), and is also really good and walking up and down them if she can hang on to the bars in the railing.   Daycare has a lot of stairs, and Michelle says she can do them all by herself!  She can also stand up from the middle of the floor now – I think she would have been able to do this quite a while ago if we’d pushed it, but since she could pull up on furniture and is rarely in the middle of a field, we kind of back-burnered it.  Happy to say it’s done now!  Next up is pre-jumping exercises – bouncing on couch cushions and beds.  Should be fun, and good for the furniture!  😉

Teagan has also become quite the drawer.  We’ve been trying to get her interested for quite a while, and probably about a month ago she began to love scribbling.

She’s getting better at other activities that involve fine motor skills such as puzzles and shape sorters.  Puzzles and actually sitting and paying attention through a WHOLE book will be big areas for us to work on, as her concentration needs to get better since she’ll start going to school in the fall.  !!!

She’s still a fairly unenthusiastic eater…I’ve said it before, I’m not sure how she’s my daughter…but when she decides she wants to eat she’s doing great, even stabbing with a fork on her own.  Since the day she decided to drink out of a sippy cup it’s been awesome, now we’re working on squirt bottles and open cups.  But I’m still basking in the glow of the sippy cup just a little bit 😉

Speech therapy continues to be frustrating.  We had an in-home session with the school district today that was fabulous – all kinds of sounds and imitations – but our 2x/week private sessions at Children’s seem to me to be more or less pointless.  There are lots of toys and bright colors and Teagan is incredibly distracted there.  And while I like her therapist very much, she’s not quite assertive enough for me.  At times I’ll ask a question and get an “I don’t know, what do you think?” which makes me crazy because I sure as hell don’t know…I’m the parent, but not the pro.  And we’re paying for it.  So we are looking for an in-home private therapist who can come work with her on a regular basis – someone with quite a bit of experience, and since T is so chatty at home, we’re hoping when it’s a familiar setting she’ll be more productive.  We have one referral (actually two, for the same person, within two days of each other) so I am reaching out to her this weekend so see if something will work.  So far our “teacher” who has inspired the quickest progress is Michelle’s daughter Gloria, who taught T to repeat “love” (sounds like “ove”) in a day <3.  I want my girl to talk so badly…I try to keep these requests to a minimum, as everyone has their own battles to fight – but for this I will ask: prayers for speech please!!

Otherwise in the lives of the Petersen’s, Teagan will be starting her second session of Backfloat Baby 2 in March…with DADDY this time!!  This latest session with it’s polar vortexes was not my best idea ever, but she loves it so.

Joel and Uncle Jeff (the Minnesota Uncle Jeff) spent last Saturday painting T’s big girl bedroom in thick stripes of pink, lavender and dark purple.  It looks AWESOME, but Daddy is a bit of a perfectionist, so pictures will come once he gets to do a few touch-ups.  Our goal is to have her in there a month before the new babe comes so she doesn’t feel like her room was stolen from her.  And tomorrow is the annual Children’s of MN Rare Genetics parents meeting, which I have put together with a handful of other parents – really looking forward to it, fingers crossed for a good turn-out!

If you have any speech thoughts or tips, please PLEASE leave them for us below…and if you know any private therapists who might work, please let me know that too!  Thanks for reading 🙂

Marriage When Life Becomes a Little More Special

Someone once told me that traumatic events have the power to either bring a couple closer together or to tear them apart.  I don’t know if I’d call getting a special needs diagnosis is a traumatic event, but it definitely is jarring and life altering.  I can absolutely see how the confusion, frustration, and feelings of helplessness can add strife to a marriage – we take our anger out on those who love us most, right?

Fortunately, I feel (very luckily) that the bond between my husband and I is stronger than it has ever been.  We are no experts – but here are things we feel have helped us keep it together.

Respect each other’s coping mechanisms

When we first knew something was wrong, but didn’t know what, we dealt with it in different ways.  I cried.  A LOT.  And he let me – he held me, and didn’t try to tell me it was probably nothing when I knew it was.  He researched.  He read studies of other trisomy 12p cases (what he could find, anyway), and spent time on an online parents group on Facebook.  My husband wanted to know what to prepare for, and I felt the opposite – I didn’t want to know, and I didn’t want to let any previous cases set my expectations for my daughter.  We respected the way each other dealt, and it’s still working a year and a half later.

Be the strong one (sometimes)

Getting a diagnosis like this is scary.  Not scary – terrifying.  So many unanswered questions…what kind of life will she lead? How am I going to deal with this?  How will people treat her/us?  What will happen when I’m not there to protect her?  How did this happen to our family??  Freak-outs will ensue, which is expected and okay – but you can’t be the one to freak-out all the time.  Your significant other will need to be scared as well, and when they are, you have to be strong for them.  Turn to them, and then allow them to turn to you.

Share the load

Being a parent is a lot of work.  Being a parent to a child who needs multiple therapies and extra daily physical and cognitive exercises is a lot more work.  Once you’re ready to dry your eyes a bit, figure out how you’re going to approach this.  There will be many exercises to do and appointments to keep…are you splitting duties evenly?  Will one do physical therapy and the other occupational?  Maybe one of you will be the breadwinner, while the other will focus on what needs to be done with your children?   If you do decide one’s career will be more important than the other’s, make sure the one taking a step back is okay with this choice, not just saying they are (and if you are that one, be honest).  And then try and be flexible when unexpected meetings, etc. come up.

Feeling like you’re fighting the exercise battle alone is a helpless feeling.  My husband and I keep a running list of our current goals – if he and our daughter work on something before I get home from work in the afternoon, and I don’t see it or he forgets to tell me about it, I can still glance at the list later and feel good about what she’s done that day. This is also helpful during those slow periods when it doesn’t feel like she’s making any vast progress – a look at the list shows all the work the three of us have done that week.

Current version of our girl’s workout sheet

Know when your spouse is approaching the danger zone

There are times when the stress can be overwhelming, so it is helpful to know when your partner needs a break.  Example: my husband is normally sarcastic in a very happy, funny way – when the sarcasm gets flat and just tinged with anger, I know it’s time to send him to the basement with a beer to relax for a few minutes.  This normally happens during meal time for us, if our sweet yet stubborn girl decides she doesn’t want to eat.  The stress ends sooner when we can recognize that it’s time for one of us to take a break. 

Maybe I’ll eat, maybe I won’t!

Ask for help

Knowing the signs of the danger zone is great, but no one is a mind reader.  My instinct when I’m feeling like my husband isn’t helping enough is to get snippy and really short with him until he either kicks it into gear or asks me what’s wrong.  If I just skip that stage and ask him to do the dishes or work on stairs with our babe, he never says no, and then I don’t hurt or annoy him.  I also (try) to remember that just because I think something needs to be done right now, it doesn’t mean he does.  And that when he’s busy, a simple “how can I help” lets him know I’m there.  Try to relieve some of the stress of life.  Do the things the other one dislikes – he takes care of our bills/taxes/paperwork type duties, and I do the laundry and order the pizza (yep, my husband hates ordering pizza).

Encourage each other to take time alone

I like to go for drinks with my girls.  My husband is on a bowling team.  And on the nights he’s bowling, I miss him.  If he was never gone, I might forget that.

Girls night!

This doesn’t have to be difficult, or require time out of the house or money spent.  On Saturday mornings I get to sleep in while my husband gets up with the kiddo, and I cannot tell you how much I look forward to it.  I’m still up by 8 or 9, but that extra hour to hour and a half of blissful relaxation can do wonders for my mood for the rest of the day.

You were each other’s boyfriend/girlfriend, then you were husband/wife, and now you’re husband/wife + parent + parent of a child that needs extra support.  It’s a lot.  Get back to you sometimes, and help your partner do the same.

Make time for each other

Chances are life was a lot less stressful when you fell in love – relax and bring those feelings back every now and then.  LISTEN when the other tells you about their day, or about their passions, even if it is football.  Take a few quiet minutes together at the end of the day.  Listen to some of your old favorite songs and talk.  Reminisce over the time the hula dancer made your husband dance with her on your honeymoon (if your husband enjoys dancing as much as mine does – and by that I mean not at all – this is a very funny memory).  Look nice for each other and go out to dinner.  If you don’t have a stellar babysitter next-door like I do, here is one of our favorite at-home date nights (SHAMELESS!) for after the kiddo goes to sleep: http://tinyurl.com/nh85scf

Va-va-voom!

Be gracious and honest in your communication

Saying please and thank you is so easy.  Yes, he was supposed to take out the trash, he doesn’t deserve a ticker tape parade for actually doing so…but hey, you didn’t have to do it, so worth a thank-you in my mind.  And don’t yell – even if you’re just asking him to DVR The Bachelor, get off your ass and walk to where you can speak in a normal voice – or wait till you’re in close proximity.  Yelling, even if it isn’t mean yelling, adds stress.  Keep the lines of communication open, even if that communication is “I need a break, I don’t want to talk about it right now.”  A fight can be like a colicky baby – sometimes you need to put it down and go in the other room for a minute.  Then you can return and take care of it with a clear(er) head.  

Celebrate together

This is a life changer, not a life ruiner.  You will work hard, and awesome things will happen.  When they do, celebrate together.  The day our daughter finally decided to drink from a sippy cup, there weren’t happier parents – had I not be pregnant, I guarantee a bottle of wine would have been opened that night. We are so happy with the progress our daughter has made, and while she gets the bulk of the credit, it’s okay for us to realize that we deserve some too.  Thank each other for working hard.  Let your spouse know you appreciate them.

So much love ❤

October Round-Up: The Good, The Bad, and The Ugly

October was an eventful month for us.  The 4th was our 5th wedding anniversary, as well as the one year anniversary of Teagan’s diagnosis.  The 21st was her 2nd birthday, which meant lots of family visiting, lots of friends and lots of fun.  Plus we had Teag’s six month assessment, began speech therapy, and life was just all around frantic – which has inspired me to separate this month’s update by The Good, The Bad, and The Ugly.

The Good

Teag’s school district PT, OT, teacher, case worker, and (new addition) speech therapist joined us early in the month to go over her six month goals and set new ones.  Overall this was a very good meeting – Teagan had achieved or made great progress in all of her goals. Here they are:

• Feed herself at least half of a meal 2 out of 3 meals per day – check.  Next: using utensils (in the couple weeks since her assessment, she’s already done great at this).
• Play with toys involving fine motor skills (place rings on ring stacker, coins in toy treasure chest, push buttons) – check.  Next: shapes into shape sorters.
• Get around home and daycare with independent walking skills.  BIG CHECK.  She is all over the place.  Next: jumping, getting up and down stairs on her own without crawling.
• Advance in receptive and expressive skills – definitely a check for receptive – we can say “go ring the bell,” and she will walk across the room to her little scooter and ring the bell that is on the handle.  We can also hand her something and say “take this to mom/dad” and she knows exactly what to do.  So she isn’t saying a lot, but I am 100% confident her understanding is growing.  Next – talking, or at least trying to talk more.

Also in the good category was Teag’s b-day party.  Lots of quality time with the grandparents, and fun with friends and halloween costumes.

 Present time!

Teagan and Mia playing with her new kitchen from Grandma and Grandpa!

 

Trick or treating was fun too – once Daddy convinced her to wear the hat part of her costume.

Daddy modeling the spider hat

Trick or treat!

 

The Bad

Given all I’ve written above, I feel a bit ungrateful for having this section.  But there are definitely things that are still incredibly frustrating – if you’re a regular reader of my updates, I apologize for being repetitive, but the STUPID SIPPY CUP.  AAAHHHHHHH!  She just wants nothing to do with it.  And she’ll walk around drinking her bottle, tipping it up toward the sky…if only I could make her understand, if she’d just use a sippy cup she’d still be able to see where she is going.  I really think she could use a sippy cup, I think she’s just stubborn.  She must get that from Joel.  Can we just all decide it’s not weird to see a 5 year old with a bottle?  😉

 

Also, I’m not sure how much progress we are making in speech therapy.  It’s been a month…but Melissa, her ST through Children’s told me with the little ones it takes some time to make progress and she isn’t worried about it yet.  So I will try to be patient.

 

The Ugly

My mind has been in a dark place this month.  I try not to put on a “poor me” attitude – my life is better because Teagan is in it, and I know how much she loves us, so what do I really have to complain about – but sometimes I get so overwhelmed.  Speech therapy (while I’m incredibly glad we’ve started it) just adds another list of exercises we need to do, and there are not enough hours in the day.  This pregnancy has been a bit rougher than my first one and I’ve had a lot less energy – so when it comes to Teag’s bedtime and we haven’t done X number of exercises, I feel incredibly guilty, and then I stress out about when we are going to do them that week.  There is so much to do and I’m so tired.  And it is never going to let up – there will always be another thing to work on…and I don’t mean like “it would be nice if my daughter is good at this skill,” more like “I hope my daughter and I will be able to have a conversation someday.”  You know what makes me really sad?   Ads for Montessori schools.  And I don’t even think I would have sent Teag to one!  Every one I see or hear is a reminder to me that I’d love to be doing things to give her an edge, and instead I’m fighting tooth and nail to not let her fall any further behind.  A fight that I’m not always winning.  Then I see dirty dishes in the sink and it’s almost enough to send me into fits, and if it happens to be a stressful week at work, forget about it.

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So how do I attempt to pull myself out of this funk?  A checklist of exercises, so I can see how much we do over seven days.  Relying on Joel to lead when I feel like I’m on the verge of a mental breakdown.  Scheduling things that make me happy – playdates, family holidays, nights with friends for Joel and I.  And talking to my friends.  Teag’s God-mother Molly recently said to me “All that love you have for Teagan is a lot of pressure.”  Damn that girl is smart.  I’ve also found a great resource in space’s VP of HR, who has recommended I visit a life coach – no I don’t want to spend an hour a week talking to a therapist about my feelings, but she said she might be helpful in helping me prioritize, be in the moment, and take care of myself.  I think I’ll at least have a chat with her – it would be awesome to be at therapy and not stressing about being late to work, or to be at work and not having an anxiety attack about what time dinner will be on the table that night.  I’d also like to ease up on the mommy guilt – on top of everything I’ve just described, I feel guilty about being stressed because it’s not good for the baby I’m carrying right now.  Oy.  I’m sure lots of parents have similar feelings.

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I sometimes hear kind comments from people who care, about how strong I am.  What I normally say is “I don’t have a choice” – which isn’t true.  I do have a choice.  The alternative would be to remain in my beat down, defeated state, or to ease up on the work we do with Teagan, which would lead to a lag in her progress.  Which is not an option.

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I will end with a few therapeutic words from Florence + The Machine.  These lyrics are from a song I listened to a lot when I was still very angry about Teagan’s diagnosis, and that still brings a tear to my eye when I scream-sing it on the way to work 🙂

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And I’m damned if I do and I’m damned if I don’t

So here’s to drinks in the dark at the end of my road

And I’m ready to suffer, I’m ready to hope

It’s a shot in the dark aimed right at my throat

‘Cause looking for heaven found the devil in me

Looking for heaven found the devil in me

Well what the hell I’m gonna let it happen to me, yeah

 –

Shake it out shake it out, shake it out shake it out, ooh whoa

Shake it out shake it out, shake it out shake it out, ooh whoa

And it’s hard to dance with a devil on your back so SHAKE HIM OFF! oh whoa

                                                                            – Shake It Out

Teagie’s Progress – Summer Round Up

Who’s a slacker?  This girl!  I can’t believe I haven’t blogged in a month and a half.  A few people have asked, where are the round ups?  Thanks for asking, it’s so nice to know people care!!  Life has been busy lately and by the end of the day when Teagie goes to bed and I used to write, I’m pretty pooped.  But my motivation is renewed, I hope to be back at it!

Last time I wrote, I told you how Teagan was starting to really enjoy swim lessons.  By the last few classes, she would laugh when we got to the pool, she was so excited.  When testing day came, another teacher came over to watch Teagan do her backfloats and zooms under the water (Teagan generally hates the former, loves the latter).  After she was done, the two teachers put their heads together and chatted for a moment, and then said “Okay, we’d like to recommend Teagan take Back Float Baby 2 next time.”  My exact words were “Are you sure?!” I was so surprised!  I knew she had been doing LOADS better than the first few weeks of class, but lots of kids take the classes multiple times, which is what I had been expecting.  So proud of her!  My little Teagie fish!

Teagie has mastered everything in her everyday objects bag – we are now establishing words in groups of threes according to different parts of the day.
Meal times: cup, fork, spoon.
When changing clothes, pants, shirt, socks.
Playing with her toys: dino, ball, book.
While her receptive communication is making great progress – the list of words we know she understands is close to 20 (and I’m sure it’s more than this, but it’s hard to test everything) – she doesn’t say a lot.  Her consonant sounds are back (WOOHOO!) so now we’re embarking on speech therapy!!  We have her 6 month check with the school district in October, so we will figure out the mix of speech to her other therapies there, and we are on the waiting list for speech therapy at Children’s.

Physical therapy is going well, except Teagie still can’t get up from the ground unless she pulls herself up on the furniture – so she can’t be in the middle of the floor and stand up without something to push off of.  Melanie (PT) said she’s be only two or three months behind in PT if it weren’t for that one piece, so Joel and Teag have been working pretty hard on that.  And at Children’s we work on stairs and an up/down obstacle course a LOT, building up those baby quads.

Teagan and April at Children’s therapy.  

For occupational, we continue to work on sippy cup…we are relying on the bottle less, which is awesome.  We also practice small switches, so turning her toys on and off, and light switches, as well as drawing.  I bought some wedge crayons, so that has been fun – possibly more so for me than her ;-).

Behaviorally, Teagan is starting to test us more.  She will inch herself toward something she isn’t supposed to get into, for example, the dog water bowl, stop when we say “No,”…wait a few seconds and try again, all the while with this impish grin on her face.  It’s so cute I struggle not to laugh while disciplining her – Joel has suggested we dress her up as Gilly from SNL for Halloween.  Michelle said she decided to push one of her friends at daycare this week – terrible twos??

We had a lot of fun as summer came to an end.  My dad and newly retired mom (woohoo!) came to visit for a long weekend, Teag loves to play with her grandparents.  We also spent a weekend at Breezy Point with our great friends Mark and Laura and their kiddos Gavin and Mia.

Teagan loves her friends at daycare, and gets lots of time with our friends’ kids as well.  I am fearful of what will happen as she grows older, if/when differences between her and other children become more noticeable.  I always want her to have a group of friends and not feel isolated – or I at least want to combat that feeling as much as possible.  So Joel and I are going to make sure she has lots to be involved in – sure, to help her make progress, but also just as a normal kiddo.

October is a big month in the Petersen house hold – our 5 year wedding anniversary, the one year anniversary of Teagan’s diagnosis, and her 2nd birthday (the first two both on October 4th, coincidentally).  When I think back to the way I felt a year ago, it was horrible…so confused, defeated, and unsure of where to turn – completely lost.  The love and support we have received from our parents and friends has been invaluable, as was talking with the professionals.  Talking with other parents in similar situations, who know how we felt, was maybe the best for clearing the dark clouds out of my heart and relieving some of that isolated feeling.  So, I am working with a woman named Janice, one of the wonderful genetics counselors at Children’s, to establish a Genetics Family Group.  We’re just getting things off the ground, and are looking at a variety of events – therapeutic for the parents (both pre-diagnosed and brand new), educational, play-dates for the kiddos, and hopefully some just for fun, social events for the parents as well.  We’re just getting moving – but I’m really excited about this!!

OH – almost forgot – we had an eye doctor appointment this past week, and contrary to my fears a few months ago, the doc says her eyes look great!  No redo surgery anytime soon – guess I can add that to the list of things I “knew” would go wrong ;-).

Teagie – June/July Round Up

Hello friends!  I didn’t post at the end of June, because I didn’t feel like there was a lot to say…but July’s been gangbuster!

Communication

The list of words Teagan understands is getting longer by the day.  Clap, wave, stomp, night-night, dance-dance, ear (thanks Grandma and Grandpa!), foot, splash, shake, book, ball, shoe.  I may be forgetting some – we keep a list on the fridge so I can give her teacher a report when she comes to visit.  On the downside of communication, the number of sounds T makes has gone down – she’s really resorted back to only Ds and Ns, and has picked up this LOUD scream that definitely happens most when I’m around but not looking directly at her, even if I’m holding her.  Kristin told me to keep an eye on it, but not worry too much yet, because it isn’t uncommon for kids to stop talking when they are fine-tuning their motor skills.  I’m still nervous.

But anyway – it’s awesome that she is understanding so much.  I’m going to post a video of her demonstrating her new moves (especially dance-dance – so cute) at some point, but it’s tough, because once the phone comes out, she has a one track mind.  So fun to play with mommy’s phone!

Eating

The eating…are you guys ready for this…it’s gotten better!  OH PRAISE THE LORD IT HAS GOTTEN BETTER!!  It’s so nice to drive home from work and not dread the dinner that is coming up.  She feeds herself some foods fabulously – more than just pancakes ;-).  Peanut butter and jelly or toasted turkey and cheese, oatmeal, cream of wheat, puffs, yogurt melts, scrambled eggs, hamburger, cookies.  We still have to feed her veggies – but she doesn’t spit them out, so I’ll take it.  She likes broccoli with cheese, and this mashed cauliflower recipe I found on Pinterest http://pinterest.com/pin/16255248626382085/     (which I love to – although admittedly, there is more butter and salt involved when I feed it to myself).  And she definitely has a thing for muffins – just like her mama!

Fun!

We have been doing a lot of fun things this summer, starting with swim lessons at Foss.  If we were still in the first three weeks, this would be in a section titled “Trying to Pull Mommy’s Hair Out” vs. Fun.  Teagan would scream and cling to me like a vice – luckily, the teacher is very patient and continually encouraged me not to give up and that eventually she would love it.  Teagan usually loves water, so I had a theory that it was the situation (it’s loud, it’s a weird temperature, lots of strangers around) not the water that was bugging her.  I called Julie, who is on maternity leave until her twins can drive (HA!  Julie, if you’re reading, I tease because I miss you – although we love Kristin too!  Can I have both please? ;-)) who said lots of kiddos – different needs or not – have trouble with new stimuli, and need some time to adjust to them.  Most people think “oh, she’s one, she’ll grow out of it,” which I suppose is true – but giving them some time to adjust or offering them extra security (a blanket or favorite toy, squeezing them extra tight when entering new situations) can help.  So last time, we went to swim lessons 15 minutes early, and just sat on the benches in the pool room watching the class before us.  Class was a BREEZE!  She smiled and laughed, she gave the teacher high-five, she was excited to go under water.  At the end of class, I still had all my hair and my swimsuit was where it was supposed to be.  Teacher and the patient mother who shares class with us gave Teag a round of applause.  Success.  We did our swim lesson routine with Maddy (Becky’s daughter) at Lisa, Joe, and Addie’s pool the day after that – lots of smiles and fun!

We had a visit from my very best friends who I met in college in June, Molly and Tracie – time with these girls is good for my soul.  And Teag had fun too!  We both finally got to meet Tracie’s sweet baby girl Hope.

Teag reading books with her God-Mother

Fun on the trampoline with Tracie and Hope

We spent the 4th of July weekend in Iowa with Joel’s parents, as well as Aunt Jaime, Uncle Jeff, and Teag’s cousins (THREE of them now).  We took Teagan to her first parade – she liked the horses and tractors, not a huge fan of sirens.  We went to Joel’s hometown reunion, which included a street dance – there are few things more fun than a small town Iowa street dance.

Waiting for the parade!

When we’re not busy driving to Iowa (2 times in 3 weeks…and one more to go for my 15 yr reunion – ish) we are playing at the pool, boating with friends, and having general summer fun.  I hope by the end of summer, she is making lots of sounds again, and using her sippy cup.  We shall see!

Boating with Scott and Levi

Teag’s Progress – May Round-Up

This month was filled with ups and downs.  Well I guess only one down, which was pretty big…but sandwiched between two BIG ups, so we’ll try and focus on that.

Teagan looking cute on the deck

Up number one…we’ve figured out a drug to stop her seizures!!  I haven’t seen one in at least three weeks now.  We started her on Kepra just after Christmas, which I believe is pretty regularly the first drug they try on kiddos with epilepsy because it is often successful and has the fewest side effects (common ones for seizure meds are tired, cranky, loss of appetite, loss of balance).  The Kepra didn’t cause any side effects…it also didn’t work :-(.  She had fewer seizures, and her doc thought they were less intense – but they only lasted a split second anyway (thank goodness), so I really didn’t see much of a difference.  We got as high as 4 ml twice a day before deciding this wasn’t going to cut it, so we started on Depakote.  For a while, we were on 8 ml of Kepra a day and 5 ml of Depakote, and the seizures stopped – and Teag was CRABBY.  If it was possible for the eating to get any worse, it did, she had NO interest in food.  Screaming every night at dinner.  So, we took the Depakote down by a ml a day and…finally…thankfully…she was happy again AND we still haven’t seen a seizure.  We’re now weening off the Kepra – down to 5 ml a day, with 4 of Depakote.  By the end of June, we’ll be done with Kepra all together, and my baby’s body will no longer be a chemistry experiment 🙂

Up number two…we had our six month appointment with her geneticist, Dr. Mendelsohn, who is one of the best in the field from what we hear.  She was THRILLED with Teagan’s progress, couldn’t believe that she was only 18 months.  This up is kind of bitter-sweet – I get so excited when doctors, therapists, etc. are so impressed with Teagan…then I feel bad, because if they are that impressed with her progress, that means there are lots of other children who are dragging their expectations down.  Such an unfair world :-(.  We went to the zoo last weekend, and as we were leaving there was a 12 or so year old special needs child having a meltdown.  I felt for the child, as well as for the two women trying to calm her down…I wanted to tell everyone around her to stop staring and give them their space.  I suppose these are the type of feels Joel and I will have now that we didn’t have before.

On that depressing note, the downer…Teagan’s eye has started drifting again :-(.  It looked great for a week or two after surgery, and then one morning I was giving her her before daycare milk in her high chair, and noticed the drift was back.  I was hoping it was just because she had recently woken up and was very tired, since the doc said when she was tired or sick we might still notice it…but it hasn’t gone away.  There are times her eyes look great, but Joel and I both feel that she is probably going to need the surgery again.  Such a bummer, my poor girl.  Her doc says the healing process is 3 months, but I just can’t believe we would still see drifting this often :-(.  That makes us very sad, good thing we have…

Up number three – WALKING!  OMG, so fun and exciting.  The most steps we’ve counted so far is 13.  She’s been taking 3-5 for two weeks or so now, and I was itching to announce it to the world via Facebook…after she walked half way across the living room to her babysitter (Miss Tippy!!) last Saturday night I decided that was good enough, and I could call my girl a walker.  So happy about this.  It is so fun to watch her gain confidence and even take pauses in her steps and change directions.  She holds her arms up in the air (for balance I assume), Joel and I say she’s pretending to be a zombie.  I wonder if she likes turtles.

Zombie walking Teagan

Sessions with her therapists/teacher have been great – we’re working on a lot of words now.  We have a bag of everyday items that we go over twice a day – cup, spoon, shoe, book, etc.  She LOVES books…my parents babysat her while Joel and I went to our friends Lauren and Rusty’s wedding, and my mom got a kick out of her always taking the book you were trying to read to her and pretending to read it herself (she flips through the pages while babbling).  As far as OT goes, her six month meal goal is to feed herself half of every meal, which would be AMAZING.  She did a great job tonight…hopefully we’re finally on to something!  Kristin (her teacher) commented last Friday on how she seems much more “with it” – I’m not sure if this is due to the decrease in meds, or just because…but I’ll take it!  She is so sweet and happy.  My favorite time of day is walking up the stairs when I get home from work, because when she sees me, she is so happy she starts laughing.  Or maybe she thinks I’m funny looking ;-).  So in love with my girl ❤

Petting the goats – she LOVED them – at the MN Zoo

Teagie’s Progress – April Round-Up

It’s been a pretty eventful month for us.  T had surgery to correct her lazy eye, as well as her six month assessment.  And she gave us a surprise – she started crawling!  More about that in a minute…

For the last few months, we’ve been eye-patching Teagan for five hours a week (which, contrary to what the picture below may lead you to believe, she HATED), hoping her lazy eye would correct itself – it didn’t.  So last Thursday we went in for surgery.

In the surgery, they weakened the outer muscles on both eyes – they can’t just do the lazy one, because then it would have to work harder than the regular one and the regular one could become a problem.  Who knew?  The worst part of the day was when she was playing in the waiting area before surgery and fell and bonked her head.  And I suppose she didn’t like the gas mask much either, but that was pretty quick.  Surgery took about 45 minutes, and then the doctor (Dr. P from Northwest Eye Clinic/Children’s – GREAT doc) came and told Joel and I it went beautifully.  Took another 45 for the anesthesia to wear off.  She was so sweet, cuddling in her bed, finally getting something to drink after having to have an empty stomach before surgery (Auntie P – see how much she loves the blankie you made her?).  Then we went home, and she got to eat her favorite pancakes :-).

She was a little irritable for a day or two, but I did enjoy the extra cuddles.  We saw immediate results – her eye isn’t drifting anymore, and she started watching TV, which she had never done before.  I put on the Lion King Friday morning because she didn’t want to play, not really expecting her to watch because she never really does, but she snuggled in next to me and paid attention.  We knew her eye drifted when she was looking at something in the distance – now, I believe it was hard to focus on the TV before.  Not that I want her to turn into a television addict – but OMG it is so nice on a lazy weekend morning to have her snuggle in and wake up for a little bit.

And on to progress…crawling.  We’d pretty much given up on it…she’s army crawled for a long time, pulling herself on her elbows and pushing with her right leg, usually dragging her left…but with all the walking progress she was making, we thought she would just be one of those kids who didn’t crawl.  Then Kristin (special edu) said well, I’d really like her to crawl, it’s so good for wrists and coordination, and can affect things like handwriting later in life.  So, a week and a half ago we put her on her belly and tucked that left leg up under her and…off she went!  And she is SO fast!!!  I’m not sure if she just didn’t realize she could crawl, but she’s all over the place now – it’s so fun!

Her teachers/therapists seemed very excited about her progress.  Physical therapy always seems to be the best – we’re going to continue working on stairs (she can get up about three on her own, and probably more if she had the motivation) and walking without her push toy or us supporting her.  Fine motor we’re working on drawing and using utensils  as well as feeding herself a drink with a straw cup and an open cup.  For communicative, they’re happy to see her giving signals when she wants something – for example, if she’s sitting on your lap and wants a horsey ride, she’ll look at you and wave her arms up and down and go “ahh ahh ahh” – can’t believe I don’t have a video of this.  And she makes a lot of sounds – ma ma, da da, b’s, p’s, v’s…so we will work on turning those into words, and adding more sounds.  For cognitive, we’re going to work on puzzles and other toys – they comment often about how good she is at figuring out cause and effect and how toys work.

So right now, we’re feeling pretty good!  She was happy to be in her swing again for those 3 nice days we had, and the neighbors have put up the trampoline, which she loves.

Oh, and thank you so much everyone for the support during her surgery!  One hundred and twenty six likes on the “surgery went well” status – ya’ll know how to make a family feel loved <3.