A lesson in life from Teegan.

Teegan.  Teegan.  Teegan.  What an incredible blessing this child has been in our lives.  The past five years of our lives have been a crazy roller coaster with him.  I received an email today from Teegan's physical therapist that put a huge smile on my face, and had me choking back tears of happiness.  But, before I get to that, I should share the back story of Teegan, for those of you who may not know it.

Teegan has been a medical handful since the day he was born.  He was born a week early, with the cord wrapped around his neck so tight that they had to cut it off, he had trouble regulating his body temperature, and wasn't getting enough oxygen on his own.  So, he was relegated to the special care nursery for the first 16 hours of his life.  When I say, "16 hours" right now, it seems like such a minimal amount of time.  But I assure you, as a mom, that 16 hours seemed like an eternity.  It was awful seeing him hooked up to all of those tubes, which were in turn hooked up to scary looking machines.  Thankfully, he was returned to us the morning after he was born. 

It didn't take me long to notice that Teegan wasn't like a typical newborn.  Within the first few months, we (along with other family members) observed abnormal staring patterns.  Teegan would just stare off into the distance and nothing could interrupt him.  We could have placed a juggling bear dressed as a clown in front of him, and he wouldn't even notice.  We were later told that this was indicative of absence seizures, which is a slightly frightening term, but we have been told that they aren't NECESSARILY dangerous.  Teegan also started running fevers of 104 every 6weeks ON THE DOT.  These fevers left him fully incapacitated and lethargic.  It got to the point where Christian and I could predict when they would start and could see the signs that it was beginning before it hit him.  By 18 months, Teegan wasn't walking or talking, and at this point Christian and I were BOTH really concerned and we were receiving a mixed bag of support from family.  Some were right on board with us with our level of concern and others were making statements like, "Oh he is fine...he's just moving at his own pace".  The latter was hard to hear because, while we HOPED that was the case, we just had that instinct that it was not.  And we were right.  

We arrived at Teegan's 18mos check-up ready for answers.  We didn't voice our concerns outright, because we wanted to see if the doctor had concerns on his own.  He absolutely did.  Teegan's growth chart looked more like a down hill slide than the normal upward arch that children should grow along.  He had only gained a few ounces in the previous six months and found himself in the 3rd percentile.  For those of you who think that sounds like gibberish, here is a quick explanation.  When Teegan was born his weight was about 20th percentile...which means he weighed less than 80% of other newborn boys.  His height was in the 95th percentile...which means he was only shorter than 5% of other newborn boys.  So he was skinny and long.  Growing babies should pretty much continue growing along those arcs with a little fluctuation.  His 3rd percentile mark was an average of the two...weight and height.  Needless to say...a GLARING problem with growth.  Then when the doctor started looking at Teegan's  milestones (i.e. number of words, walking, eating, sleeping etc) compared to other children his age, he referred us to Doernbecher Children's hospital.  Our suspicions were confirmed.

A little over a month later we found ourselves in the waiting room at Doernbecher waiting to see our first several specialists.  Over the next few months we saw a Neurologist, Physical Therapist, Audiologist, Occupational Therapist, Nutritionist, Speech Pathologist, and one or two others I can't remember the titles for. During this time we were given some tools to help Teegan catch up and received a few minor diagnoses (one being a sensory sensitivity) and the observation from our Neurologist that he was a "quirky" child, but nothing that explained everything that was going on.   

Christian and I, and the friends and family who were a big part of our lives, worked hard with Teegan over the next few months.  On Christmas day Teegan gave me the best gift I have ever received.  He walked to me, on his own, with no coaxing.  I felt him staring at me while I was in conversation with my mom.  I looked over at him, and he just walked to me.  It was only five, maybe six steps...but he walked.  And soon after he started speaking.  The only way I can explain it is, it was like a  light came on.  Teegan was trapped inside his own head for a while, and then one day he was let go.  And he started walking and talking and catching up to where he needed to be.

 

Teegan at Christmas with Uncle Tyler

We went back to the specialists for a 2year checkup, and they were shocked.  They told us that they rarely see his level of improvement.  He had gained about 6more ounces (which still is below average but they were happy that he was continuing to grow), he was walking, talking, and was doing better with his sensory stuff.  The neurologist released us.  He said Teegan would need continued speech therapy and to come back if we didn't continue to see improvement.  Then we started the process to move and lost insurance.

Fast forward to the present...  

I have been fighting hard for the last SEVEN months to acquire health insurance for our kids...primarily to get Teegan back in to see the doctor's he needs to see.  Neither of our jobs offer insurance, and private insurance is WAY too expensive for us.  So, we decided to apply to the Washington state insurance offered to all Washington children who are uninsured.  It took seven months but we were finally approved last week.  So, now we begin our search to find a pediatrician and get back to the specialists he needs to see.

In December I began the process of trying to get Teegan into a pre-school offered at Jadyn's school, that is federally funded and is specifically for children with delays.  After a few months of evaluations and meetings, we were able to get Teegan in!!  They let him start this year to finish out the year, and then he will go back for the next school year.  (Christian and I had already made the decision to keep Teegan out of Kindergarten for an extra year to give him some extra time to catch up and maybe make the kindergarten and subsequent school process a little more normal for him.)  We love his teachers and he thoroughly enjoys attending (and riding the bus).  

Teegan is CLEARLY behind other kiddo's his own age.  He is quite possibly the sweetest most loving and affectionate child in existence.  But, he is just not where he needs to be.  He has had continued medical issues and continued delays.  Christian and I are both guilty of automatically assuming that Teegan "will never......" or "won't be able to...."  It really bothers me that we do this.  And I try really hard not to.  But it is really hard.  So today when I got this email (Yes...I am FINALLY  back to the email) from Teegan's physical therapist (through his preschool) I was incredibly humbled. The pictures were attached to the email.  

Hi there,

I just wanted to share what Teegan did in therapy today.  I am using pictures of a variety of activities for Teegan to choose from.  It helps keep both he and I on track and gives him the ability to make the choices and the order in which we do them.

You were right, he certainly is a sweet boy and I am enjoying working with him.

Miss Stacey

TEEGAN ON ROLLER SKATES?!?!  I would have NEVER even TRIED this at this point.  =(  I'm generally very optimistic in my thought process, but for some reason I always lean toward the negative when it comes to what Teegs will be able to do.  If I don't believe that he is capable of something, who will???  I am so very proud of my little man.  He works so hard at life and he is such a little ball of sunshine.  I am incredibly blessed that I get to be his mommy.