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Well I guess it is some time for reflection.  I am not sure what this blog will become.  I cam tell that I am not updating as regular as I had in the past.  Hope I am not disappointing anyone.  But this blog is really for me and at some point Tessa.

So what is new?  I went to Lunch the other day with a friend that has a child with special needs too.  He made a statement “want to know the best feeling in the world? Knowing you’re not alone.”  I really think this is very true.  At times we all think that we are alone pushing this rock up a hill.  So back to the request lines, to date, this blog has had one song lyric listed in it.

Music is very important to me.  Music puts food on my table and pays the bills.  I know what you all are thinking…no I am not on tour J and I doubt that I ever will be on tour.  But, I always tell people that I make rock n roll happen at the Arena.  So yes music is a strong point in my life.  The following song lyrics echo the thoughts above of “knowing that we are not alone”, but also that we are not strong enough to do things alone:

You must, You must think I’m strong
To give me what I’m going through
Well forgive me, forgive me if I’m wrong
But this looks like more than I can do
On my own

I know I’m not strong enough to be
Everything that I’m supposed to be
I give up, I’m not strong enough
Hands of mercy won’t You cover me?
Lord, right now I’m asking You to be
Strong enough, strong enough
For the both of us

Well maybe, maybe that’s the point
To reach the point of giving up
‘Cause when I’m finally, finally at rock bottom
Well that’s when I start looking up
And reaching out

I know I’m not strong enough to be
Everything that I’m supposed to be
I give up, I’m not strong enough
Hands of mercy won’t You cover me?
Lord, right now I’m asking You to be
Strong enough, strong enough
For the both of us

‘Cause I’m broken
Down to nothing
But I’m still holding on to the one thing
You are God
And You are strong when I am weak
I can do all things through Christ who gives me strength
And I don’t have to be strong enough
I can do all things through Christ who gives me strength
And I don’t have to be
Strong enough, strong enough
Oh yeah

I know I’m not strong enough to be
Everything that I’m supposed to be
I give up, I’m not strong enough
Hands of mercy won’t You cover me?
Lord, right now I’m asking You to be
Strong enough, strong enough
For the both of us

 I do not know if I will every entirely know how difficult this season on life was.  I am amazed at where my family is at, and of how strong my relationship has become with my wife.  I still get very sad when I think of my Tessa.  I have the Hope that she will grow strong and bright and find success.  I get sad when I hold her or rub her small head and feel the tube that runs down to her belly, or feel the bump on her head where her shunt is.  We have been so lucky that Tessa has done so well.  At times you start to believe that she is “normal” (whatever that means now) but it is hard to have the physical reminders that she does have special needs.

I get very scared at times.  I am so terrified for the day when her shunt breaks.  I am nervous to tell THO what she has when she is able to understand.  The other day my wife brought home a book: http://tinyurl.com/3czrtmu. The book is called “All About Me: And My Shunt” we have started to read the book to Sadey so that she will understand why THO goes to the Dr so much, or why special people come over to work on Tessa weekly.  Well I guess the point of all of this is the best feeling in the world is, knowing you’re not alone and that I know I’m not strong enough to be everything that I’m supposed to be…

THO’s MRI report

Tessa had a quick shot MRI done on Friday, June 3.  We saw her neurosurgeon immediately afterwards who discussed her scan with us.  It was awesome that we were able to see the results so fast.  We literally had the MRI, walked across the street to his office, and he had them on a laptop for us to look at.  It was maybe 30 minutes from the time she was scanned to the time we saw the pictures.  Pretty cool!

Dr. C, her neurosurgeon, said her scans looked great.  He said one of the big things they look for is brain regrowth, and she has had a lot of that.  Her ventricles have decompressed and the brain has filled in and expanded where the water was.  She does have one pocket of fluid but the doctor said it is to be expected that some fluid would still remain given the severity of her hydrocephalus before she had her shunt placed.  They also think she is missing about a third of her corpus callosum, but Dr. C said she may compensate for what she’s missing and just use the tracks she has.  He said there are some people missing the whole thing that appear to be fine outwardly. Obviously, the excess fluid she had probably prevented it from fully developing before she was born, plus the brain didn’t have time to develop to full term anyway since she required an early delivery (8 weeks).  The doctor said she is developing beautifully, too.  We couldn’t really expect her to be doing much better than she is.  She is pretty much a normal 1 year old who just so happens to have a shunt.

Developmentally, she’s trucking right along!  She is crawling and just in the last couple of weeks is starting to do it more and more, and faster (she’s been quite proficient at the GI/belly crawl for awhile).  She’s got some strong little legs, too.  She is pulling herself to a standing position and starting to cruise a little bit as well.  I call her my little daredevil—nothing seems to scare her and she’ll try crawling or climbing up on to anything.  She is getting very interested in books and loves to play with the kids at her daycare.  She is really social, has started to wave and give kisses, and is starting to say some words, mostly “Dusty” (our dog’s name, who she absolutely adores).

Also, her occupational and physical therapists say she is doing great.  In fact, the OT said a couple of weeks ago that pretty soon she won’t be able to come anymore because Tessa is just doing everything so well.  Even though we love our OT, I said, “Well, that’s ultimately what we want, isn’t it?”

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So we are only 25 days away from Tessa’s 1st b-day.  How crazy is that.  What a year it has been.  I do not know if I will every experience anything again that was as hard as the last year.  It is strange how life just continues to move on we really do not have a choice.

I think that ultimately success of an individual is determined by the way that they chose to move forward.  One can sit in the current stink that they are in or a person can take steps to move through the current situation that they are in.  I am very proud that H and I have chosen to just put one foot in front of the other and continue with life.  I do think this year has been the most challenging and difficult time in my marriage.  I remember H saying when we first found out about Tessa that the divorce rate for folks with special needs kids is way higher than the normal divorce rate.  H and I have had some very hard times.  I think we lost when it came to communicating about our relationship.  We were quick to fight and not quick to support.  I do not believe that we told each other how much we appreciated them being there to get through the situation.  Life just started going and we went with it.  But, who know how we did.  I am very happy to report that H and I are doing very well right now.  It took some time, I think we both kinda needed to heal a bit from everything.  I do not know if we ever realized how hard things were. Life then starts going.

Some friends of ours were in the NICU in the 83642 for a week.  The other day I went to the NICU to visit them.  It was harder than I expected to be back.  I got to see some of the day crew that interacted with H more and provided care for Tessa.  It is always fun to show them new photos of Tessa and how she is growing.  My friends in the NICU were in good hands.  I talked with them about there experiences in the NICU and then they asked about Tessa’s stay.  They are a new group of friends for about the last 9 months so they really did not know the full Tessa story.  So, I began to tell the Tessa story.  I so totally got hard to telling the whole story.  I started at the 20 Wk ultrasound, then amniocentesis, weekly high risk ultrasounds, the c section experience, brain surgery, a 56 day NICU stay flying to Duke medical for a very experimental treatment and current weekly OT and PT appointments.  Talking about it all again made everything very really.  However, in the moment you do not realize how much is going on.  Life then starts going.

It is funny, life still is based on how Tessa is “doing” folks aways ask.  At times it kinda brings me down a bit.  I am not sure why it brings me down.  Maybe it is because when I am around her all the time, then I do not see her Hydrocephalus.  But when folks ask, it makes me wonder if my little gal is ok or not.  I believe that Tessa is doing great!  But, when asked it does make me question things.  But life then starts going again.

I hope to do a year in review, well I guess year and 15 weeks in review soon.  It may be a combo post between my wife, friends and other folks.  It would be fun to have other perspectives of the last year and what people have seen/learned via little Tessa.  I have had a friend say that Tessa has made his faith in God and Christ more real.  Kinda a funky lesson, but I know that God and Christ have great plans for Tessa Hope.  She is doing things that Dr’s never said she would do, so if that increased faith or her just being increases faith then I am good with it.  So, I am taking story submissions via e-mail at mcolsen@boisestate.edu.

The year in review should be exciting.  I have done a bad job at updates as of late.  Sorry about that.  I had mentioned that I was going to do better but I guess life then starts going.

What a person can handle

I am starting to believe a life lesson that I think it is hard for one to commit to believing in or attaching to.  I have had a hard week.  I  always get a bit nervous when working on a large marketing plan for a major event.  I always wonder if I am doing the “right” thing for a client and I attempt to put the best plans together and believe in those plans.  I stress, worry and lose sleep over concepts and ideas for events.  In the end things always work out and plans come together, events load in and load out and I get to be a part of that process which is super fun.

So I will now attempt to get to my point.  I have started to look at the things that are hard or from what I perceive as stressful during the moment; and then saying to myself “you had a child that had brian surgery at 2 days old”.  This is nothing to stress over or worry so much about.

I believe that all of us have this “thing” that we have been through or are currently going through that is so much bigger then the small details of life that one must live in.  Hoever, it seems that we get hung up on the small details of life more than the real things that matter in life.  We get through the real things in life and then get stuck on the small things.

So I am attempting to remind myself that I have been through much more than my current situation.  I am sure that you have also dealt with much more than your current life situation.  I am attempting to remind all of us of the real life situations that have mattered.  Work, deadlines, cars, debt are all important details in life.  However, in the end these things are not the key things in life that matter.

Duke

So my wife and I are going to take (well we think we are going to take) Tessa Hope to the University of Duke Medical center on March 1st.  I say that we think we are going to take her because we are still in the middle of some testing on blood to see if Tessa is able to go.  You see we banked Tessa’s Cord Blood at birth.  Which, is kinda a crazy story in it self.  So I guess I will start there.

Cord Blood is the blood that is in the cord to the baby belly.  Cord Blood has DNA and Stem Cells which are a source of fear for many folks.  Some people think that the use of  Stem Cells is a playing with God.  But I say that the cells are her cells so we will use them.  So we found out that we would have Tessa on a Thursday.  H was able to find a cord blood bank that was able to overnight a cord blood kit to us.  After a 2k investment we were good to go to store her blood.  We really did not know why.  But we though it was a good idea because the DNA and stem cells may be able to help her down the line.

So down the line we found out that there is a Dr at the University of Duke that we will call Dr Ku…I think I used Dr K in old posts.  So Dr K is like the only person in the world that is using Cord Blood to treat hydro.  The thought is that the cells can go beyond the blood brain and heal damaged tissue.  Please note this will not cure her Hydro in any way.  Tessa will always have Hydro and need to be shunted all her life.

You can read more on what Dr Ku is doing at: http://www.fetalhydrocephalus.com/hydro/Infusions-1.aspx

So today we sent off a sample of Tessa’s DNA to Duke.  The Cord Blood lab will then send a sample of Tessa’s blood to Duke for comparison.  If all goes well then we are on for a trip to Duke on March 1.

Tessa will be baby #31 that has ever had this cord blood infusion done.  How crazy is that?  It is a very cool thing but like they say in the 80’s it is very heavy.  The infusion is very simple, so we really do not worry that things will go wrong.  We will only be in Duke for 3 days then back to Idaho.  Duke will check in on Tessa every now and then and we may need to go back to Duke at some point for follow-up.  But the cool thing about all of this is that we are doing “everything” that we can to help our little gal.  I must say that I am very proud of H and I for doing everything that we are able.

I think that a lesson can be found in Tessa.  Many folks say that she should not be here.  I am still learning what the lesson is.  Maybe it is Faith, or Hope, it could be just Strength.  She continues to teach me and remind me that she truly is not my child but a child that totally belongs to God.  All I can do is my best to do everything that I am able for her but God is responsible for taking care of her.

I am sure that I will have more updates on Duke soon.   It will be a crazy process.

2010 in review

The stats helper monkeys at WordPress.com mulled over how this blog did in 2010, and here’s a high level summary of its overall blog health:

The Blog-Health-o-Meter™ reads This blog is doing awesome!.

Crunchy numbers

Featured image

A Boeing 747-400 passenger jet can hold 416 passengers. This blog was viewed about 1,400 times in 2010. That’s about 3 full 747s.

In 2010, there were 34 new posts, not bad for the first year! There were 2 pictures uploaded, taking up a total of 16kb.

The busiest day of the year was April 22nd with 107 views. The most popular post that day was What the snizzle??? .

Where did they come from?

The top referring sites in 2010 were fetalhydrocephalus.com, facebook.com, mail.yahoo.com, mail.live.com, and en.wordpress.com.

Some visitors came searching, mostly for tessa hope hydrocepulus, tessa hope, tessa hope hydrocephalus, prayer for hydrocephalus, and christians with hydrocephalus.

Attractions in 2010

These are the posts and pages that got the most views in 2010.

1

What the snizzle??? April 2010
1 comment

2

About April 2010

3

Face to Face with Tessa May 2010

4

WOW Where did I go?? April 2010
1 comment

5

Going to the Dr. is getting very hard April 2010
1 comment

The last 163 days

So what have we been up to the last 163 days?  Well Tessa was in the NICU for 56 of those days.  I do not really know how to describe what 56 days in the NICU is like.  I do not think that anyone can understand that, which, is the best thing that I learned from being in the NICU.  People do not know or understand what someone is going through.  I now tell folks that are going through a hard time that I cannot imagine how difficult that would be on them and those close to them.  I got get tired of folks stating that they understood how I felt.  I wanted to say, yea you have had a kid in the NICU for 56 days and attempted to live as normal as a life as possible while worrying every day about your family, spouse, work and your own mental health.  Yea right!

So the NICU, how would one describe it?  Well a person is given blue ID cards to verify who you are.  You only need those ID cards for like the first day, then every front desk staff knows who you are and a magic door opens for you.  I think that it is a bit of irony that the NICU is on the same floor as labor and delivery.  NICU mom’s and dad’s get to walk by the waiting room for L&D on there way to the NICU.  The L&D room is filled with folks that are so excited to hear the news about happy and healthy babies and NICU mon’s and dad’s are walking into the NICU.  Kinda a different feeling.  You get to the magic doors and pick up a phone and the door opens.  At times someone answers but for the most part it just opens.  You go to an army of sinks which have hand scrubbers.  The scrubbers are like what at Dr uses and you are now using them.  You scrub all the way to your elbows.  You make the walk to the room; there are lots of NICU rooms with 3 babies to a room.  I am surprised at how full the NICU always is.  Tessa is in a room with twins.  Tessa had the following things done to her in the Boise NICU:

  • Brain Surgery 3 days old
  • Intubated 2 days old
  • Picc line 2 days old (this is an IV that goes all the way to your heart)
  • Bilirubin lights
  • Ultrasounds
  • G tube for feeding
  • EKG tests

We were not able to hold Tessa until she was 3 days old and my wife was the only one to be able to hold her since they were changing beds before her surgery was done.  So it was a total fluke.

My first visitors other than family were the guys from my Tuesday group.  I think it is a bit sobering to take other folks in the NICU.   You tend to get accustomed to the process.  It reminds you where you are when you take other people back and you can see how nervous one gets.  People start to fumble with the scrub brushes and bad jokes are told.  My guys came to see Tessa and as I said the NICU is hard to describe.  The NICU can make grown Men cry.

Well Tessa stayed in the Boise NICU for like 2.5 weeks I think and then we moved out to the Meridian NICU in the 83642.  The NICU in the 83642 has a lot better accommodations for a mom.   My wife was given a room in the 83642 where she could order food and rest while checking on Tessa for the rest of her stay.  Tessa got to ride to the Meridian NICU in an ambulance to the new location.  So that was her first official ride.

The NICU in the 83642 was super different from the Boise NICU.  We had a huge space that was dedicated to Tessa and at times I think the most babies that they had was 5.  Tessa was the favorite for many of the RN’s that worked at the 83642 and many of them really enjoyed caring for Tessa.  She officially got to “graduate” from the NICU on July 22 2010.  It was super to have her home, but the next 107 days would be filled with adventure for the Olsen house.