Our journey through a prenatal Trisomy 21 (Down syndrome) diagnosis and beyond

I wish it were possible to recognize at the beginning of our life’s story what an incredible journey we are truly on. If so, I would have sat down years ago and begun documenting all the ordinary and extraordinary events in this amazing life I have been blessed with. Sometimes, though, it may take just one more thing to open your eyes into the beauty of the life you have led and causes you to pause and truly count the blessings that are now so many they will never be enumerated.

If you are just joining us, please go back to September 2012 to get caught up.

Tuesday, February 26, 2013

10,000 ??? Holy Cow!

I just noticed that my page has been viewed over 10,000 times.  That is CRAZY!  I guess a few people are reading this :) 

Another interesting week here on the home front.

Colton went back for his recheck on the leg and it is healing well.  No more restrictions!  He is still favoring it a bit, but running around like a mad man again which is great to see.  We even got outside a bunch this weekend, so that was WONDERFUL!

The older crazies are hanging in there too. They have been pretty helpful (especially the little lady) and are getting ready for a vacay at Grandma and Grandpas.  I am excited for them--they deserve a fun trip!

Mr. Owen made an unexpected trip to the doc today. 

Yesterday, I was not quite quick enough with the bottle preparation and he was TICKED OFF!  I haven't really heard him scream like that before.  (Whomever said kids with DS are happy all the time is WAY off base, at least with O!)  After the fit, I noticed a bunch of little red dots all over his face and forehead. 

Then I made the greatest mistake one can make. 

I Googled it.

Not a good choice.

I did find pics right away that showed what he had.  Petechia (please do not ask me to pronounce it!).  Then I started reading about it. 

Even worse choice.

From the Mayo Clinic site:
Petechiae (pronounced puh-TEE-kee-ee) are pinpoint, round spots that appear on the skin as a result of bleeding under the skin. The bleeding causes the petechiae to appear red, brown or purple. Petechiae commonly appear in clusters and may look like a rash. Usually flat to the touch, petechiae don't lose color when you press on them. 

Petechiae may indicate a number of conditions, ranging from minor blood vessel injuries to life-threatening medical conditions. 

A number of things — including prolonged straining, certain medical conditions, specific types of injuries and some medications — can cause this bleeding. 

Prolonged straining
Tiny petechiae of the face, neck and chest can be caused by prolonged straining during activities such as:

  • Crying
  • Coughing
  • Vomiting
  • Childbirth
  • Weightlifting
Certain medications
Some types of medications can result in petechiae, including:

  • Aspirin
  • Atropine (Atropen)
  • Carbamazepine (Carbatrol, Epitol, Tegretol, others)
  • Chloral hydrate (Somnote)
  • Cimetidine (Tagamet)
  • Desipramine (Norpramin)
  • Indomethacin (Indocin)
  • Morphine (Avinza, Ms Contin, others)
  • Naproxen (Aleve, Anaprox, Naprosyn)
  • Nitrofurantoin (Furadantin, Macrobid, Macrodantin)
  • Penicillin
  • Quinine (Qualaquin)
Infectious diseases
Some types of infectious diseases can cause petechiae on the skin, while others may result in petechiae on the inner surfaces of the mouth or eyelids. A variety of fungal, viral and bacterial infections can cause petechiae, including:

  • Cytomegalovirus (CMV) infection
  • Parvovirus infection
  • Endocarditis
  • Hantavirus pulmonary syndrome
  • Meningococcemia
  • Mononucleosis
  • Rocky Mountain spotted fever
  • Scarlet fever
  • Sepsis
  • Strep throat
  • Viral hemorrhagic fevers
Other medical conditions
Many noninfectious medical conditions also can cause petechiae. Examples include:

  • Hemolytic uremic syndrome (HUS)
  • Idiopathic thrombocytopenic purpura (ITP)
  • Leukemia
  • Infantile scurvy
  • Vasculitis
  • Vitamin K deficiency

UMMMM....OK... This is where I freak out.

Remember that  O is just 2 months old (almost).  There are many things on those lists that are bad, but become REALLY bad when it involves an infant. The one that stuck out was Leukemia.  I know this is semi-related to DS, so this really sent me reeling. 

The only thing that helped me out was that they appeared right after his crying fit.  I hoped that it was just due to the straining, but I began to get that pit in my stomach.  We have been so lucky in terms of health with Owen and all that he could be facing.   I was preparing myself for the other shoe to drop, so to speak. 

I called the pediatrician's office and they set an appointment for the morning, nothing I needed to rush in for, but something that should get checked out since he is so little.  After chatting with several of my Rockin' DS moms on FB, I was feeling better.  I am so glad to have their support!  What an incredible blessing in my life.

Anywhoooo....We went in this morning.  Doc confirmed it was petechiae and ordered blood work to check on things.  Within 5 minutes, the tests were complete and levels were normal.  Phew.  One was a tad high, but she thought that could be due to a virus.  Ironically he left the doc's office with even more dots because of the heel prick for blood--a good scream fest that I don't blame him for one bit.   Poor little guy!

So where does this lead?  Thoughts.  Dark, yucky, icky thoughts.

This was really a reality check for me. If it were one of the other kiddos, I never would have taken them in.  I realized that my level of worry is going to just be greater with O-bug.  I was so worried that this was the moment I was going to find out what terrible things were in store for him. I was so worried that this was going to be the day I thought "Wow.  Down syndrome really is the worst thing that could have happened to us." 

But it wasn't.

And it isn't.  By a long shot, even.

As I was chatting with some of the moms last night (and early this morning) I was really reminded how RAW this is all still.  I have been caught up in the day to day crazy since O arrived and have just done what needed to be done. 

This is what I am feeling most days. Dory just might be my new hero. :)  I gotta find a shirt like this.

I realized that I need to keep blogging, talking and writing.  I do not have time for meltdowns, so I am going to try to be proactive and have mini melts along the way :)  Healthy, right?  Not really, but I will keep thinking about it all and processing the emotions and feelings along the way.  I have several posts that I have started around several topics including helping other parents in the same boat and the use of the R-word.  Look for them to come sooner than later, I hope. 

Until then, check out this site--a great resource and reminder on how the "R word" is unacceptable.

1 comment:

  1. Google gets me in trouble ALL the time! ;) So glad O is okay! I think the added health risks with our babes are going to keep us freaking out for a while!


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