Pediatric Stroke Awareness Month

May is pediatric stroke awareness month!  This subject is near and dear to my heart and I hope you will share in my passion to spread awareness that strokes can happen at any age, to anyone!  Many individuals have no knowledge of this medical complication until it closely affects them personally or someone that they love.  I believe we can change that!  I have written about pediatric stroke awareness before and back then I used the following quote, which I still love!  

"Never doubt that a small group of thoughtful, committed people can change the world.  Indeed, it is the only thing that ever has."  - Margaret Mead- 

I love this brave little boy!

Like many people I meet and share my story with, I was unaware that a child, let alone an infant or an unborn baby could have a stroke.  The news was shocking when a perfect (by medical standards - not my own), healthy pregnancy ended up in an emergency c-section and hours later my husband and baby were being transferred miles away from me to the closest NICU.  A few months later we took Lincoln back to Mayo Clinic in Rochester looking for answers, and were told that our sweet baby boy had indeed experienced a stroke in utero.  

I am inviting and asking all of those I love and know to wear the color purple throughout the month of May and to send me photos of you and your family in the color so I can add you to my page!  I also encourage you to share the information on Facebook, Instagram, or wherever you feel it might be seen. I know it is easy to live our daily lives, with the blessings of health and healthy children -- as we should, however, this isn't the case for everyone.  While I am so blessed myself and forget that tragedy happens when things are going well -- I meet a lot of people who appreciate and love support.  I have made amazing friends because of what we have been through and support is powerful!  Knowledge is also power, and just because the topic at hand does not affect you personally, does not mean that it isn't someone else's reality, possibly someone you even know!  

Key Chain Charm

I have pediatric stroke awareness key chain charms available!  If you would like one, please comment below or message me and I will drop one in the mail for you!  I am not asking for anything in return other than your help to raise awareness and show your support!  

Click the link to download a free color page for your kiddos!

There is so much growth needed in the awareness avenue regarding the topic!  I wanted to re-visit some of the basic facts with you all.

A Few Facts

• Strokes can occur before birth, in infants, children and young adults
• Risk of stroke is highest in the first year of life and peaks during the perinatal period (a few weeks before and after birth)
• Occurrence - 1 in every 2800 live births (this is likely underestimated)
• Sixty percent of infants with a stroke diagnosis have specific symptoms such as seizures in the first three days of life
• Forty percent of infants will have no symptoms and the stroke is recognized later with delays in movement, development or seizures.  (This was Lincoln, diagnosed later even though he spent time in the NICU with complications.  We just did not know the extent of them despite multiple tests being performed.)

Cause

• In most cases, like ours, the cause is unknown

My Baby Isn't Using One Hand

• Hand preference should not be determined or noticeable before the age of one year and often much later than that.  So a child who favors one hand, leaves the other hand in a fist, or doesn't bring both hands together during play needs to be referred for further testing.
• Delays in early milestones -- rolling, sitting, pulling to stand, crawling and walking -- are additional reasons for evaluation.
• This is a common reason or first sign that families notice.  (With Lincoln hand preference at just months old is what prompted us to go back to Mayo Clinic.)

Ways of Diagnosing

• Magnetic Resonance Imaging (MRI)
• Ultrasound
• Electroencephalogram (EEG) if seizures are suspected
• Electrocardiogram (ECG or EKG) performed if a heart problem is present or suspected, often associated with strokes
• Blood samples to check for blood clotting disorders. 
• Other tests may be performed outside this list depending on the patients needs

Therapy

Children often receive multiple therapies for long periods of time -- some even decades or as long as needed.  Therapies may include (but are not limited to) occupation, physical and speech therapy to help them learn skills for daily living and to increase movement.  

CIMT Birmingham Alabama - Week 2

Weekend: We had a nice weekend with some sunshine and 60 degree weather.  We spent one morning at the Birmingham Zoo where Lincoln enjoyed riding the train, seeing the lions, tigers, elephants, giraffes, and other animals.  Whenever we have traveled in the past for appointments or therapy we always visit the local zoo, so we had to keep the tradition going!  Again, Children's was great and wrote a letter saying we were visiting for therapy and our admission to the zoo was free.  I love the effort they put into the families who travel here to see them.  It is a nice touch when a lot of the expense is out of pocket already.  Sunday was a quiet day for Lincoln and I, we attended church, went to the gym and grocery shopping, finishing the evening with homework.  Looking forward to completing week 2. Monday: Mom's are amazing aren't they?  Well really all parents are amazing!  However, I could tell this morning was going to be a tough one from the moment Lincoln got up and even though I put on my best smile and found an optimistic attitude I will admit to you all the idea of crawling back in bed with my coffee sounded wonderful.  One of the reasons I love sharing adventures and blogging is to be honest.  The superficial stories are fun to read, but they give altered perceptions of perfection, which is not reality.  Week one was awesome, I couldn't have asked for more!  But that doesn't mean some days are not hard.  I wouldn't change anything we are doing here, but I think it is OK to be honest that I have had to remember all Lincoln is going through and take a few deep breaths on certain days when I would give anything to have a few minutes at a local coffee shop to myself.  My patience at moments needed work and a few tears have fallen between so many good moments! 

Therapy today went well overall, with a few tantrums in between games.  Lincoln played with some new toys, painted, went shopping (yes, you guessed it) and ended his session with a treat of playing/working on Jackie's I-pad because he listened so well.  Today while he was on the I-pad I answered questions regarding his progress and it was fun to discuss with Jackie the things we really have seen improvement on.  I was encouraged today that he is better at using his pointer finger and able to turn the weighted shopping cart better with his right hand only.  As with anything in life, change does not happen over night and it takes hard work and consistency.  This will be the thing as Lincoln's mom that I need to remember most when we go home because daily activities will be important.  

Fun Fact - The gas station's here have hand sanitizer by the pump!

Tuesday: Can I get a WA-HOOOOOO!!!  Today was a big win!  Not only was Lincoln in a great mood, he had an awesome day in therapy.  A lot of movements we have been working on in therapy and at home were easier for him today and more natural.  He still has a long way to go, but we have learned to celebrate all the little and big things.  I am so thankful to see progress, especially after he was a little cranky yesterday.

After therapy today we went to buy him some new shoes.  The ones he has for his brace, are heavy and he does not like them.  We found a fun pair that he loves and to my happiness they aren't terrible colors.  Ha ha, do other moms feel me here?  I am all about the super heroes and making my little man feel special, but I am always grateful when he picks reasonable things!  By the shoe store was a bakery a couple people recommended to us, so we had a Valentine's Day treat too! Wednesday:  

Downtown Homewood is where we went shopping today and it has adorable stores to browse including the bakery I mentioned above and a local toy store.  

Today was an off day for Lincoln.  Not because he didn't try, because he did work very hard, but it was clear to us he was under the weather.  He did not sleep well last night due to a fever and I ended up going to the ER today for a small skin wound that was red and puffy.  Had I been in Phoenix, I would have watched it and not taken him in, however it is on the right arm which is the side we are working hard on and I did not want to take a chance as we still have over a week left in Alabama.  Unfortunately being out of town, the ER was our option as the after hours care wouldn't see us.  Yuck!  The ARNP was great and gave us an antibiotic to fight any infection, a topical ointment and I have been giving him Tylenol for the fever.  Could be a mix of a few thingsw, as mnay germs are in the air, but I am praying my bubby is back to normal soon!  Today he was sleepy, and wanted me to carry him - which is not like my wild, fun boy.  Hence the scrath on his arm to start with. *he was playing at the gym for those wondering how he got it, it is not the casted arm.    

Side Note: Can I just say how amazing the Children's ER was in Birmingham?  They had us checked in and in a private room within ten minutes!  I live in a large city in Arizona and you would think the experience would be awesome, but I am not sure it comes close in comparison.  Huge, huge, huge kudos to Birmingham as they have obviously done something right to be so well known that people travel here!

Thursday:  Today was a HUGE day for success!  Lincoln was able to isolate his "pointer" finger for tasks and pushing buttons.  We have been working hard for him to do this and it was so exciting to see him succeed today.  I would never in my own life think this would be hard, but when your brain tells you to use all your fingers together, being able to isolate pointer, or thumb and pointer together is very difficult.  It requires repetition before it becomes a natural movement.  We saw Kodi the therapy dog again today, went shopping as always and Jackie surprised Lincoln with some new superheros to capture as well as multiple fun new games to play!  Overall a great week with a few bumps but I am happy to say week two is almost over! 

Huge THANK YOU to those who have called over the last two weeks to check on me or chat!  Lincoln is great company but adult conversation means more than you know!

Friday:  Skipping today's post as after therapy Lincoln and I are headed to Chattanooga!  We are excited for a fun filled weekend away from the apartment.  Stay tuned for the updates and photos of our adventures in TN!