Posts of 2013 Every Preemie Parent Should Read

Last year I shared the list of posts from around the blogger community that moved me the most.  There are many, many fabulous posts, these are just the ones that for me, I remembered all year.  These are the posts when I get down, that I know will help lift me up.  I hope they do the same for you.  Read and enjoy and if you love the posts, leave a note for the blogger thanking them for being brave enough to share.

When you need to hear, “I get it” through all of this:

Words for Micropreemie Parents by Becca Wood for Cheering on Charlie

When you wonder what your preemie is going to think of all of this:

An Interview with My Preemie by Kasey Matthews for Preemie Babies 101

When you wonder what the siblings are going to think of all of this:

An Interview with a Preemie Sibling by Kasey Matthews for Preemie Babies 101

When it feels like moms and dads deal with all of this differently:

The Challenges of Being a NICU Dad by Dr. Sue Hall, MD for Papa’s of Preemies

When you need a reminder to find the good in all of this:

The Gift of Disability by K for Transcending CP

When the guilt of all of this is overwhelming you:

Dear Me:  A Letter to Myself by MrBoosMum for Premmeditations

When you need a reminder that even through all of this, you’re just a mom:

 (Micro) Preemie’s Mother Day by P for Handpicked Miracle

When you need a reminder that most doctors are on your side through all of this:

End of Life at Birth by Dr Keith J Barrington for Neonatal Research

When you are missing your friends through all of this:

Friendships After the NICU by Jessi Bennion for Life with Jack

When you’re trying to make sense of all this for your child:

To My Child with Special Needs by Tatum Marinkovich for Ain’t No Roller Coaster

If you have a blog post (written by you or someone else) that you want others to see, please feel free to share in the comments.

preemie posts 2013

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Those Anniversaries

Tonight is the night.  It’s the two-year anniversary of when our journey began…or at least, when we knew it had begun.  It’s the day that I timidly made the call at 10:00 PM on a Saturday night to the on-call OBGYN because I just felt something wasn’t right.

I had spent all evening laying on the couch scouring the internet for pre-term labor symptoms.  They are kind of vague, but I supposed that I could check three of the five.

My dad was visiting.  I wasn’t being very welcoming.  But, he’s my dad and he knew something was wrong.  He was sitting at the end of the couch that I was laying on.  My feet over his lap.  I think he had been watching me for a while.  Finally, he put his hand on my foot and asked if everything was alright.  I saw the concern in his eyes.  (He’s a preemie dad, mind you.)  I knew that he felt it too.

I went upstairs, Kyle came up minutes later.  I needed someone to tell me I was crazy and that there wasn’t anything wrong.  He didn’t.  He told me to call the doctor.

I explained everything to the doctor expecting (or at least hoping) he’d be the one to tell me I was overreacting?  He didn’t.  He took it much more seriously than I ever imagined.  I was told to go to the hospital immediately.

Once at the hospital, things very quickly spiraled out of control. We all know the rest of the story, but it’s the anniversaries that are the struggle.

Overnight tonight (April 16/17) is the anniversary of my being admitted to the hospital on strict bed rest.

Sunday is the anniversary of Owen’s birth.

May 24th is the day that I’ve yet been able to write about in detail.  Kyle and I talk about it… in bits and pieces.  Last year, I could only share a picture.

June 13th…well actually, it was the next morning on the 14th, was the first time that my knees buckled and I slid down the kitchen cupboards in a sob as I learned of the surprise passing of Owen’s first best buddy.

July 11th, Owen was in the OR for six hours.  They weren’t sure he could tolerate such a long surgery, but his liver was getting very sick from being exclusively fed TPN since birth. His intestines had to be re-attached in 4 places.  Clearly, I must have, but I don’t remember breathing that entire six hours.  I was so proud of Owen that day.  Once again, he did when a lot of people wondered if he could.

July 31st, after 100 days in the NICU, Owen was finally moved to the feeder grower team.  He didn’t stay with the team for long

September 1st, broken bones.  Lots of broken bones.

September 25th, Nissen and g-tube.  The surgeon kept telling us it would be hard on Owen.  I didn’t listen.  It was incredibly hard on Owen.  It was the first time I really questioned if I was pushing Owen too hard.

October 19th.  Home

October 25th/26.  Readmitted.  Owen’s temporary g-tube stitch came lose.  He had a 10 minute operation to change him to the Mic-Key, but had to spend a night – back in his same spot in the NICU – for observation.  Surgery #7 was finally an easy one for Owen.  I slept in the recliner next to his bed that night and was woken at 6AM to the call that my grandmother passed away that morning.

These are the moments that haunt me.  The anniversaries that stretch out before me for the next seven months.  I hear it gets easier each year, but I don’t know.  Last year was hard in a different way.  Last year I was defeated because we were still in the throes of it all.  Owen celebrated his first birthday in the PICU on bi-pap with a rate (“rate” means he was being given breaths by the machine).  Really feeling the emotions of what that anniversary meant was a luxury I didn’t have time to entertain.  I was still, for a full year, in zombie mode.  Marching through what needed to be done.  Pushing the pain away, hiding it somewhere deep down.  But pain doesn’t work like that, does it.  It can’t be hidden forever.  It will always find you and for me, here it is…in the form of those anniversaries.

 

Delays-Schmelays

Owen has had several development assessments over the last month.  Early intervention did their annual review and updated his HELP assessment.  He met with a Physical Medicine and Rehabilitation doctor for the first time.  He had a speech evaluation (PLS-5 tool) to kick off Speech Therapy.  And, on Friday he had a NICU Follow Up Appointment where they administered the Bayley assessment.

It doesn’t matter which assessment or type of health professional you ask.  Owen is developmentally at the 10-12 month-old-level.  He was born 20.5 months ago and his due date was 17 months ago (we stop correcting in April).  Clearly, his development is behind his birth date.

Many people would look at these scores and be devastated.  We are not.

We are thrilled.

The progress Owen has made since his first birthday has been amazing to watch.  At one-year-old, he was like a limp noodle.  When I held him, it was like holding a newborn, he supported none of his weight and sunk into my chest.  He could only bear weight for a second or two in his arms and legs and he could not roll over in either direction.  Owen was also, essentially, mute.  His cry was barely audible and the only other sound we ever heard from him was wheezing when he struggled to breathe.

Had we given these same assessments to him on his first birthday, by my best estimates, he’d have scored at the 0-2 months level for language, probably 2-3 month for gross motor and maybe 3-4 months for fine motor skills.

Now, put those scores into this context.  He was born 15 weeks 2 days too early and he spent a total of almost 8 months in the hospital.  Maybe even more important than those two facts was his breathing.  A typical infant respiratory rate is up to 44 breaths a minute, but after 6 months of age, most take 25-30 breaths a minute.  (Adults take 8-16 breaths a minute.)  In the first year of his life, Owen’s respiratory rate was nearly never below 50 breaths a minute and most of the time 60-70 or more breaths a minute.  Try that for a minute – a breath each second.  As you do it, try doing (let alone learning) a motor activity.  Or, try talking, or even babbling, through a breath each second.  It’s nearly impossible to do.  Owen was not physically able to do much more than breathe and it took a lot of assistance to do that.

Yes, he was born 20.5 months ago, but he did not start to develop until 7-8 months ago when he was physically healthy enough to work on development.  Do you know what that means?

In my mind, Owen is an overachiever.

He’s been developing for 7-8 months and he is at the 10-12 month-old-level.  And he’s done all that with a brain injury, crossed eyes, excessive abdominal scarring and tightness, an oxygen cord constantly in his way and lungs that can’t fully expand.

Yep, I said it: Delays-Schmelays.  My kid is a rock star.

A very busy rock star.

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He’s also exactly, what CurePity is about.  Have you signed the pledge?

Not Alone – Emotional Holidays after the NICU

The holidays can be a bittersweet time for many preemie families.  There is, of course, joy and time to spend with those that we love and the holidays with a child is always exciting.  At the same time the holidays can be a reminder of the hurt that comes with a baby being born too soon.

Many families are choosing to keep away from larger family gatherings in efforts to protect their children.  All too often, these parents are criticized for being “too overprotective” or “paranoid”.

Other families are spending the holidays with a child, or children, in the hospital.

Some families are reminded that their baby, who has passed, won’t be part of the holiday festivities this year.

And then there are families who struggle with PTSD or PPD and even though they know they are supposed to be happy…and maybe everything worked out as well as it could have, but they still are silently struggling to get through (never over) the pain of their baby coming too soon.

To everyone who is feeling a little bittersweet, I want you to know, YOU ARE NOT ALONE.  From our family to yours, we send you the warmest hugs and wish for you moments of comfort and joy.

For the holidays, remember the wisdom of zebras:

zebra

And most importantly, remember you are not alone.

If you’re feeling bittersweet this holiday season, please leave a comment – you may make someone’s day by sharing that you’re feeling what they are too.

I’ll share first:  I’m missing my family in Wisconsin.  My brothers and nieces and nephew, aunts, uncles and cousins.  I’m missing my niece and nephew that moved to the East Coast and I didn’t get to say goodbye.  I miss time with my family but am also grateful that I’ll be with Kyle, Kellen, Owen and my inlaws.

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Forward Progress Only, Please

Maybe we jinxed ourselves by being part of a news report on how good he was doing?

Maybe it’s teething?  It’s true, teething can cause regression in other development areas.

Maybe, as was suggested by his doctor today, it’s because of all the gross motor development he’s been doing?

Maybe he was getting bored with the limited varieties of food his allergies allow him to eat.

Maybe he’s not as hungry after we went up on his formula calories?

I don’t know, what’s caused it, but I’m guessing you have already figured out Owen’s not doing so well with eating lately.  Actually, it’s pretty much been since Thanksgiving.  He was orally eating 300-400 calories a day, but now, he’s getting 50-70 on a good day.

We still sit three times a day, but most days he only eats one of the three.  I keep repeating to him (and myself) “I will not give up.  I will not give up.  I will not give up.”

We keep trying new foods.  Pickles, watermelon, apples dipped in caramel, carrots dipped in ranch dressing (allergy note, most ranch dressing brands have eggs), beef jerky, fruit leather.  He even gets Noosa Yoghurt where the frivolous use of the ‘h’ stands for “heck of a lot of money”.  That ‘h’ may also stand for “holy smokes, this is delicious”.  Of the luxury yogHurt, Owen will take a few bites of it, but it’s still not large amounts.

I try to keep focusing on the fact that he is still leaps and bounds ahead of where he was this summer when he wouldn’t swallow.  If I can get the spoon in his mouth before he slaps my hand away, he does swallow it.  He’s continuing to sample new textures and flavors, even if he’s not eating, he does explore foods most of the times that we sit to eat.  Also, each session at the table is great for his fine and gross motor skills.  He’s starting to throw food (not one of my favorite milestones), he’s really got that gravity concept and pincer grasp down.  He pinches food with his thumb and index finger and releases it to the floor with a smile (some milestones are much more exciting to this mom than others) and he’s communicating wonderfully when I say, “Owen do you want to eat?” and he shakes his head emphatically “no” (excuse the mellow drama, but… “just stab me in the heart, Owen”).

Just behind, “I will not give up.  I will not give up.  I will not give up” is “Thank God for g-tubes, Thank God for g-tubes, Thank God for g-tubes”.

I’d been warned by many that this would likely happen several times in his learning to eat.  I do realize that learning is not linear.  I can rationalize it to death.

Truth is, going backwards stinks.  But Owen won’t hear it from me.  “I will not give up.  I will not give up.  I will not give up…..”

What If…

I often feel as if I hang in the balance of the “what ifs”.

There are the “what ifs” that didn’t work out in Owen’s favor.

  • What if he hadn’t gotten CMV?  Maybe if I had chosen the unthinkable – to not breastfeed?  Would his course have been different? (You can read this story here)
  • What if I had been seeing a Maternal Fetal Medicine doctor from the start, maybe P17 and/or a cerclage would have helped me stay pregnant longer.
  • What if I had gone in one week earlier when it felt like Owen was kicking my tail bone?  Is that when my cervix started to thin?  Could I have still gotten a cerclage and stayed pregnant longer?
  • What if we had kept Kellen out of school Owen’s first winter home, would that have kept Owen healthier?  Could he be off oxygen today?
  • Kyle often thinks, what if he had helped me paint the boys room and rearrange the furniture – did I do something then?
  • My dad has wondered, what if I hadn’t been chasing Kellen and carrying him as he had a temper tantrum the day before I went into the hospital – did that start the labor?

There are also the “what ifs” that, thankfully did not happen.   Most notably:  what if he had died?

Is it logical for me to think about all these “what ifs”?  No, I know I can’t change what happened and I truly believe I did nothing that caused Owen’s early arrival.

Is it human nature to think about all these “what ifs”?  Yes.

For the most part, I focus on what’s happening and what is in front of me.  But, I will not apologize for the occasional “what if”.  I really can’t imagine that Owen will grow up never wondering how his life would be different had he not been born so soon.  I promise you, my 5’ 7” brother wonders if he would have been taller than his 5’ 10” sister, had he not been born too soon.

If I don’t acknowledge these thoughts exist –   If I do what so many people suggest, and “don’t think that way” (which is really just pretend they aren’t there) – how will I ever be able to help Owen work through his own, “what ifs”?

The feelings are real.  They won’t stop me from helping my son succeed and I can see in Owen that he won’t be stopped from succeeding.  But I do believe, it is okay to admit that the journey of life, is not quite the way I planned.

Healthy Babies Are Worth The Wait

Over the last couple of months, I’ve done some volunteer writing for March of Dimes (MOD) Minnesota and have joined their Marketing Committee.  It’s an honor for me to do this work because I believe that without March of Dimes funding of important prematurity research, Owen would not be here today. For example, grantees of MOD have developed surfactant therapy, a treatment that has reduced deaths of respiratory distress syndrome by two-thirds.  In addition to research, MOD also looks to support NICU families.  The hospital that has managed all of Owen’s care, University of Minnesota Amplatz Children’s Hospital, will very soon be the second March of Dimes Family Support Site in the state of MN.  Another focus area for MOD is education.  Their current campaign, “Healthy Babies are Worth the Wait” is aimed at helping women understand the risks of electing, without medical cause, to induce before the 39th week of pregnancy.  As the mom of two preemies, I was asked what “Healthy Babies are Worth the Wait” means to me.  Here is my message to moms considering an medically unnecessary early induction.

You know that woman who says how great she felt when she was pregnant?  She also radiated joy and sunshine the whole time.   She didn’t get morning sickness or stretch marks, and somehow, she escaped waddling through her third trimester.  Does this woman actually exist?  Can she?  I’m inclined to believe that she probably just remembers her pregnancy that way and didn’t really feel that way.  I guess, I don’t really know.

I know this much for sure: that woman is not me.

I am the woman who hit the wall of nausea about fifteen minutes after conception and it proceeded well into the second trimester.  Reglan was the only reason I was able to stay out of the hospital from losing too much weight.  I was so ill that I felt it was better to tell my bosses and several co-workers, that I was pregnant at about 6 weeks because I didn’t want them to think that my extreme fatigue, calling in sick and sudden and frequent trips to the restroom were indications of me not liking, or being good at, my job.

In both of my pregnancies, I was thrilled to be having a baby, however, “sunshine” and “joy” are not words anyone would have used to describe me.  Those hormones!  I have no idea who that crazy woman was that took over my emotions, but even I didn’t like her.  Then there are all the comments about how big, or not big, you are.  Why do people think that it’s okay to discuss a woman’s weight?  Openly?  To her face?   I don’t care how pregnant a woman is.  It’s never…ever…okay to say, “Woah!  You look like you’re about to pop!”  (True story, by the way, and I was only 33 weeks.)

I could go on and on about the inconveniences of pregnancy and there are entire books dedicated to that subject, much of which is embarrassing.  I’ll just get to my point; pregnancy wasn’t exactly fun for me.  In both of my pregnancies, I did complain about how I felt.  In fact, it was right around the time of that earlier mentioned comment (from the extremely rude store clerk) that I wondered if I could possibly get 7 weeks bigger and more uncomfortable.

Unfortunately, I will never know.  I never got those last weeks.

One week later, at 34 weeks pregnant, I burst into a sob and, wide-eyed, stared down the doctor who told me my son was going to be born that day as she started explaining the risks of a premature birth.  A little more than two years later, I again, heard the risks of a premature birth.  This time, I was too numb to cry.  How do you respond when you hear your baby has less than a 50% chance of surviving and if he does live, there is an 80% chance he will have long-term issues due to being born at only 24 weeks?

Some women who have, or are, experiencing those final weeks of pregnancy tell me that I am lucky that I never had to experience those uncomfortable weeks.  I’m never sure how to respond to those women.

Are they really not able to understand the agony of your baby being born too soon?

While I know, I don’t fully understand those last weeks of pregnancy.  I do understand the alternative.  There is the silence after he is born as you wait…forever, it seems…for him to cry.  Then, there is the long, lonely wheelchair ride as you’re being discharged from the hospital while your child is still in the NICU.  As you wait for him to get healthy, you pump, and pump and pump in hopes that a machine will keep your milk supply up, because your baby is not ready to breastfeed.  You have to ask to hold your own baby…and sometimes, you’re told “no.”  There is nothing like being introduced to parenthood by being asked to help hold down your child while the nurse inserts a tube from his nose to his stomach (I said “no” by the way. You do have that right).  There are IV’s, often in the head, so the baby can’t pull it out as easily and when you hold your baby you’re fighting with the cords attached to him.  And then one day, you get out of the hospital and you dread things like weight checks and developmental screenings.  Maybe your child passes, but if he does, it’s probably with a D+.  You anxiously watch as his daycare friends and your friends’ kids learn to do everything faster than he and you wonder, “Will he always be behind?”

The scenario I just described is the scenario of my late-term preemie, Kellen.  He’s the 34 weeker who had about as smooth of a course as a 34 weeker can have.  It took about 2.5 years before I stopped noticing the differences between him and his friends.  He’s one of the lucky ones; it doesn’t seem there will be long term effects.

On the other hand, there is my very complicated course, 24 weeker, Owen.  He too, is doing amazingly well given the events of his 6 month stay in the NICU (7.5 months total hospitalized in his first year).  He started crawling at 18 months old.  A really big milestone is he has just started getting breaks from his continuous oxygen to help him breathe.  A few hours a day he gets to roam without a cord holding him back.  For eating, he’s recently had a surge, so he’s now taking 20-30% (versus the 0% two months ago) of his calories orally.  The rest of his nutrition comes through a button he had surgically placed in his stomach.  These things may not sound like much, but you would only think that if you didn’t see where we started.  Since Owen, I’m no longer afraid to hold him down for uncomfortable procedures.  Now, I actually am performing some of those procedures.  Just last night my husband held him down as I replaced the feeding tube in his stomach.

So no, I don’t understand what a 39-41 week pregnancy feels like.  I’ll admit; it looks pretty uncomfortable.  However, I so wish I did know what it was like to have a healthy baby.  From my perspective of having two babies born not healthy, I can’t imagine anything that would make me want my healthy pregnancy to end early.

Some women think, “But, I’m 37 weeks, that’s not preterm.”  My response is, “Are you really 37 weeks, or is that an estimate of your due date?  Due dates can be off by as much as two weeks.  What if you’re really only 35 weeks?  At 35 weeks, you’re likely looking at a Kellen scenario…best case.”

I can’t relate to a full term pregnancy, however, I can relate to the desire to have the absolute best for your baby.  I can also share that the emotional pain of having a baby born too soon is beyond any physical pain I can imagine.  Unlike the aches and inconveniences of pregnancy and the pain of labor, having a baby that’s born fighting to live is a hurt that you never forget.  I don’t know a preemie mom who doesn’t struggle with guilt, anger, helplessness and jealousy.  Most of all we suffer daily a deep and profound sadness that we didn’t get those last weeks of pregnancy.

Some think that a late-term preemie is not that bad.

My boys were born at different ends of the prematurity spectrum. As different as their journeys are, I can say this:  It doesn’t matter if your child is a micro preemie or late term preemie, it still hurts.  I’d give anything for an extra day, week or month(s) to either of their pregnancies.  I’d give anything for any amount of time to better their odds of living and then thriving; any amount of time to not have to take the long and lonely wheelchair ride out of the hospital while my baby waited in the NICU; any amount of time to not have to ask to hold my baby…and be told “no.”

Any amount of time to have a healthy baby.

What I really want to say to all expecting parent is this; if you’re starting to think you can’t possibly get any more uncomfortable and swollen or that your due date doesn’t work well for your calendar, I cheer you on, and plead with you to waddle through to 39 weeks!  Feel free to complain (just maybe not to a preemie mom), and pat your swollen belly, and know that this won’t be the last time parenting is uncomfortable.  Most importantly, know that it’s a miracle inside of you and that he (or she) is worth it!  Both of you, mother and child, deserve a healthy baby with the very best chances.

Please!  Please!  Healthy babies are worth the wait.

March of Dimes wants to know your thoughts on Healthy Babies are Worth the Wait.  Please join them (and me) for a Twitter chat at 12:30 CST today.  Look for #39weeksmn.  Never done a Twitter chat?  Well, neither have I.  Here is a great tutorial.  If you can’t join the chat, please leave any comments on this post.

Whether you’re joining the chat or not, please pin, tweet, post or share this great infographic that MOD created for the Healthy Babies are Worth the Wait campaign.

Also, if you haven’t signed the petition to light the White House purple on January 3 to honor the 75th anniversary of President Roosevelt founding the March of Dimes, please sign now at http://1.usa.gov/XjOakw. It’s a quick two-step process — provide your name and email, then click on the link that’s emailed back to you and sign the petition.  It’s a simple and free way to give hope for preemie families.  

And, a note of thanks to two friends who took the time to help me edit this post.  Kar and Will, I appreciate you greatly! 

 

How to Observe Prematurity Awareness Month

According to the CDC, “each year, preterm birth affects nearly 500,000 babies—that’s 1 of every 8 infants born in the United States.  It is the most frequent cause of infant death, the leading cause of long-term neurological disabilities in children, and costs the U.S. health care system more than $26 billion each year.”

To most, that should be enough to explain why Prematurity Awareness Month is important.

To me, however, prematurity awareness month is also to help the world understand the individual stories of prematurity.  It’s to help people understand that prematurity doesn’t mean the baby just needs to stay in the hospital until he gets a little bigger and then he’ll, magically, by two, catch up to everyone else who had a birthday around his.

Last week as I was walking out of Kellen’s school with Owen, a special needs mother I had never met before mentioned that she’s been noticing Owen over time and was happy to see how big and strong he seems to getting.  We talked briefly, bonding as special needs moms who share a school that specializes in special needs and then she said, “he’s just a preemie?”  I know it was an innocent question, but what it felt like was another mom questioning my son’s special needs-ness.

Prematurity Awareness Month is helping people, like this woman, understand all of our stories.  It’s a month to help the world understand that each premature birth is different with different outcomes.  There are some 23 weekers that go on to have very few issues.  At the same time, there are some 35 weekers that go on to have significant issues.  The only assumption you can make is all premature births face risks.  Each year, 12 percent of newborns in the United States face those risks.  That is too many.

To put it into perspective, in the United States, each year 1.9 Million people are diagnosed with diabetes (American Diabetes Association); 900,000 people have a heart attack (CDC), there are 500,000 premature births (only includes live or considered viable births) and 230,000 people are diagnosed with breast cancer (CDC).  Premature births are one of the BIG health care concerns for this country.  However, too many people do not understand the risks and very real outcomes of premature birth.  Please be a trumpet for the cause and help the world understand that research to help prevent premature births is necessary.  Help them understand each of our stories.  Make everyone aware that there is no such thing as being “just a preemie”.

In honor of Prematurity Month, please participate in spreading the word.  Here are ways you can participate.

  • Keep the message up all month, but be loudest on November 17, World Prematurity Awareness Day.  I will be posting facts and statistics about prematurity on Facebook and Twitter throughout the month, feel free to share with your community.
  • Stay connected with the community on the World Prematurity Facebook page
  • In support of the month, March of Dimes is launching their new campaign “Healthy Babies are Worth the Wait” share the information with your community.  Follow the national and your regional (MN in link, there is one for each state) March of Dimes pages on Facebook and Twitter.  For those of you in MN, tag your tweets with #39WeeksMN.  If you live in another state, ask your regional office what their hashtag is.

Let’s unite as one big voice so we can help the world better understand each of our children’s journey and work to help reduce the number of premature births.

Why is Prematurity Awareness month important to you?

Relentless Determination

Watching Owen work on his physical development has truly been inspirational. It somewhat reminds me of watching Kyle’s favorite movie, Miracle, when Herb Brooks, played by Kurt Russell, keeps blowing his whistle, “again…again…again” – working the team to their limits. The only difference is Owen’s not being punished by anyone and there is no coach blowing the whistle. For Owen, it comes from within and he is relentless.

I wish I had better pictures and video, but this several week old video is the best example of how Owen pushes himself until he can no longer stay up and then, he takes a short rest and gets right back up. Anytime that someone is not playing directly with Owen, this is what he’s doing.

Today, his work isn’t in trying to pull his legs under him, like in the video. Now, he is focused on crawling. He is so close and so driven that sometimes he starts crying because he gets frustrated that he’s not moving. It’s not a temper tantrum cry, it’s more of a battle cry. He’s willing himself to move. So far, he’s able do one full rotation – leg, leg, hand, hand – in forward motion. He doesn’t get it always, but I’ve seen him do it several times. My favorite part is that when he does do it, he often lies down on his side and claps his hands for himself.

As a parent, you feel like your job is to be the teacher. Owen’s got something you can’t teach, but it definitely inspires me to want to be a better person.

90 Day Physical Therapy Goals

I’m back from a wonderful vacation, feeling refreshed and breathing easier. I spent the weekend with two of my college roommates doing a whole lot of eating, talking and relaxing in Vail, Colorado. Even with the rain today, it was just what I needed. I, of course, missed the boys terribly, but am a firm believer that you can’t take care of others if you don’t take care of yourself.

Unfortunately, one of my concerns from Friday did come true – Kyle got sick and spent 2 of the 3 days mostly in bed. Grandma Sandy was a trooper and handled the boys on her own. I know she must be exhausted, its tiring for me and I don’t have to think too much about what I’m doing, so I have a feeling she’ll be happy to be back home this morning.

We’re starting off the normal week on big note. Owen finally has his feeding evaluation Tuesday (today) morning. Hopefully it goes well and we get a good plan towards helping him orally eat. We also see Pulmonary Thursday. Due to his recent Prednisone (steroid) course, I’m not expecting any changes but this is when we will discuss the plan for keeping Owen healthy through the winter. Who knows, maybe she’ll say that we don’t have to go into hiding until October, versus September? At least that’s my dream. I’ll keep you posted on both outcomes.

One place that we do have a plan is in Owen’s Gross Motor skills (large muscle activities like; sitting, standing, crawling, walking, jumping). Owen had his evaluation on August 2 and from that, his therapist recommended goals that will stretch Owen but, with health and practice, should be achievable. Here are the agreed on goals:

Official Diagnosis: Gross Motor Delay and Muscle Weakness (currently at 6-7 month old age equivalent)

2 Month Goals:
1) Crawl Five Feet on all fours
2) Side Sitting (supported on hands or elbows) as a precursor to be able to transition from sitting to laying on stomach.

2.5 Month Goal: Transition from sitting to all fours

3 Month Goal: Pull to stand from kneeling

These goals have my heart a-flutter. When I have to baby proof my house will be a big day!