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Hi Everyone,
It is now time for a much overdue report on MJ. She is still seizure
free and has been since the beginning of July. Last week has been one
of her best ever. Monday, she actually did physical therapy with a mininum
of complaining and she did a great job. Then she played in her stander
for almost an hour. That evening she was back in the stander for another
hour and was bouncing to the beat of the musical toy she was playing (while
Mom was cooking). It was so great to have a day like that. The rest of
the week went well for her also but not as impressive as Monday.
You are probably wondering what has happened over the last few months.
I think it has been over two months since my last update. We have had
our ups and downs. Her neurologist has kept her on anti-seizure medication
because he is worried about the return of seizures. We have been rejoicing
about the seizures completely stopping and her increased development but
waiting for "the other shoe to drop". It is unnerving but MJ
continues to do better. A few weeks back we were very worried that something
was going wrong. The day after I commented that I could see improvement
in all areas, it seems as if all improvement stopped for two long weeks.
She finally started to come around and we realize that all kids slow down
and speed up developmentally. e can’t ask too much from her all at
once since her seizures stopped because she has so many areas in which
to improve. She has been steadily improving ever since; however, the worries
remain . . .
Several weeks ago we found out MJ lost a little weight in the last
6 weeks. She grew 3/4 of an inch though so she is very tall and is stretching
up more than growing out. ACTH, the steroid shot, usually causes a big
gain in weight then there is a slowing of weight gain afterward and then
resumption of normal weight gain. MJ didn't gain the usual weight
then lost a little. It is somewhat alarming but the pediatrician doesn't
think it is a problem yet. She also mentioned that she was not willing
to count her out since MJ has already exceeded expectations for
"hypsarrythmythia" kids. She was being positive but that is
a really alarming statement since MJ still does not walk, talk or
crawl. I think that was our "call to arms". We had been waiting
to see what would happen after the seizures stopped but now it has been
over four months and she is not where we had hoped she would be.
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Since then we have been working on forcing, inducing, or helping things
along. We are being more diligent and working harder to help her and we
are seeing results. Hence the great week that has buoyed up our spirits.
So let me report on some of the good things that have happened or improvements
she has made. MJ loves books. In fact, any printed materials excite
her. If you show her one of her favorite books, she gets really excited.
She loves being read to and always turns the pages herself. Sometimes
she just wants to turn the pages and not have the book read. She smiles
more and makes so many more new expressions. She is rolling all over and
getting to the toys she wants to play with. She is stronger, sleeps better
and tolerates being upright longer. She is more picky about what she is
eating. She reacts when we come in a room. She makes great eye contact
and is really aware of what is going around her – no matter where
she is. You can tell when she is over stimulated, she shuts down on you
which is a great normal reaction. Her eye-to-hand coordination is improving
so she is starting to help feed herself a little. She is really good with
her right arm so I guess she won't be a lefty like her mom. I was watching
her roll back and forth yesterday and she was being very purposeful. She
knew exactly what she was doing and was trying figure out how to do more.
The thing that I think is the most impressive is her desire and determination.
Both have improved dramatically. With drive and determination comes the
will to overcome all obstacles. That is probably her most important improvement.
I have to tell you about this really "normal" experience we
had with her. After her last doctor’s visit, she had to have blood
drawn for a few tests to help determine the cause, if any, of the weigh
loss. We took her to the lab and proceeded to tell the tech how difficult
this was going to be. We have many horror stories we can tell about that.
The tech look at her arm and says that vein looks good - the first place
she looked. We both held her down and the tech makes the stick, MJ
screams and blood is drawn. The whole process took 3 minutes tops. It
was a totally normal experience with a 2 year old. [Usually, it takes
the techs awhile to find a vein that will work and they poke and prod
and blow out several veins until they get someone “more qualified”
like a neonatal nurse who can make the blood draw.] Funny what makes you
happy when you are a parent.
Well that is the last few months in a nutshell. As you can tell, we still
continue to all need all of your prayers and support.
Take Care
Rich & Christine
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