Forever our Hero!!

THESE HORRIBLE SEIZURES.......

Jymani started school this week and he was only able to attend one day because he woke up this morning with a cough and runny nose.  We aren't sure of it is allergies, but we are not about to take the risk.  By afternoon he appeared to be feeling fine, all besides a draining nose.  Tonight Jymani and I decided to go outside and play football and he was really having a great time.  After awhile we sat down in the garage and had a snicker ice cream bar, so he could cool down and relax a bit before daddy started tossing the ball with him.  The kids came out to join us and moments later I heard Mikayla saying, "Buddy are you okay?"  Right then we knew something was wrong...Cortez ran to his side and I turned him towards me.  He was blue in the lips and purple in the face.  We tried talking him through it, we always feel like this helps in some way.  He tried talking to us but his words were jumbled.  He took a breath and then he started going into another one!!  Cortez grabbed him and held him and asked him to breath...Mikayla ran for the diastat.  He then starting coming out of this one.....seconds later he was right into another one!!  This all happened in a matter of about a minute and a half.  I was about to call 911 and then he came out of it with a deep breath and signs of great exhaustion.  He said, "Mommy, I'm tired"  He is now sleeping in my bed...It has been an hour since the seizure.  This is the postictal period.  He could sleep for hours........PLEASE LORD....END THESE SEIZURES....

JYMANI LOVES THE OUTDOORS!!

Now that the weather is nice Jymani has been able to play outside and he is loving every minute of it!  It is a wonderful feeling to watch him  play basketball and other outdoor activities with his siblings!  When the weather gets warmer Jymani is not able to play outside because he is heat intolerant.  His body is unable to produce sweat, which is the way our bodies cool themselves.  His body overheats almost instantly in hot weather and this generally induces a seizure!  Needless to say, much of his summer is spent inside where there is air conditioning!  So we are enjoying every bit of Spring possible!

March 31st - April 5th

We started Jymani on the Clonidine patch this week.  His Behavioral Pediatrician thought it might help with Jymani's behaviors during the day.  We noticed NO signs of this helping whatsoever and decided to discontinue its use.  The patch caused Jymani to have quite a rash on his skin where it was placed and it irritated him to no end when he had it on.  We tried no Clonidine at all after removing the patch, but Jymani was not falling to asleep before midnight while off it entirely.  So we have since reintroduced the pill and we are currently just giving him a half a tab.  So far so good, he is falling asleep by nine and sleeping all night!!

Coloring Easter Eggs 2010

We are so grateful that Jymani was able to decorate Easter Eggs with us this year!  This is the first time in his 5 years of life that he has been able to do this!  And he did a pretty good job too!  (Aside from the fact that he thought he should give the food coloring a "taste test"!  lol)

 

...yet another seizure!

On our way home from WI Jymani had a seizure.  We were just leaving the Dells and he was wearing my sunglasses because he cannot stand the sun in his eyes.  Luckily, Cortez always looks back at him to make sure he is okay and noticed that his lips were turning purple.  It lasted about 30 seconds and he was out of it, but it still scares us just as much every time.  He slept the rest of the ride home, which is very typical when he has a seizure.  Every time he has one we pray that it is the last one.  It has been so long since he had one last.  So again, I will drop to my knees as pray!

Spending time with Grampa!!

Jymani had a great time visiting family this weekend!  He played and colored and showed everyone what a big boy he is!

Results from Neuro-Pysch Eval

We have been told that Jymani's mind is that of a 2 or 3 year old.  He is significantly delayed...which we knew.  Speech is his biggest delay and they are pushing for more speech therapy for him.  He is talking in bigger sentences and we have noticed that things are sounding clearer!  He recognizes his name on paper and we have been working on shapes and colors with him.  The doctor's tell us Jymani is a "Complex Kiddo"  ....I was thinking...okay now tell us something we don't know!  ;)  Jymani is such a strong boy...I believe he is learning and making great strides.  He works well with his teachers and he makes a new project every week that we hang up in the kitchen wall for him!  He loves looking at all his fancy artwork!  I am so proud of you Jymani......xoxo

SnOwY dAzE!!!!!!

Jymani has been having a great time in all the snow we have been getting over the last few weeks!  He loves playing outside and he loves jumping in the snow!