Saturday, December 8, 2012

What's Up? ;0)

I know, I know.  I haven't blogged in a while.  Things have been busy, lately and, well, just haven't gotten much of a chance to blog.

It's not that Isaiah hasn't had reactions (anaphylaxis) or new symptoms, it's just that it is all becoming so normal to us.  So normal, in fact, that I just don't even think about blogging even when I do have the time.  At least it hasn't been so bad, though, that I have to keep you updated. :0}

Let's see . . . where to start?  Well, over the summer, Isaiah started having some new symptoms that we still have no clue what's going on.  He started turning blue in the middle of the night.  So, we had some tests run to figure out what may be the cause.  Isaiah had an EKG, EEG, and an echocardiogram   His EKG was normal.  The other two, not so much.  Isaiah's EEG showed that he could possibly be experiencing some kind of seizures and his echocardiogram came with a list of not-so-great (but not-so-bad that it means emergency treatment) results.  His echo showed that his left ventricle is enlarged, he has 3 leaky valves, and has a murmur.  Oh, and they couldn't rule out a hole in his heart or unusual position/size of an artery.  Hmmmm.

For now, I don't know what all that means - we're waiting on further explanations. We did see a cardiologist, but he had the results from an EKG to go over, the echo results hadn't been given to him at the appointment.   Did I mention that my insurance wouldn't cover the echo, so they rejected the claim?  Thankfully, the hospital forgot to mention this, so we cannot be charged or billed the $3,000 for the exam - the hospital is stuck with it.

Anyway, Isaiah has an appointment in a couple of weeks with the head of the pediatric  neurology department in Miami to (hopefully) shed some light on all of this (including the neuropathy).  Our local neuro was hoping that Miami Children's would be able to do some kind of testing that will give us info on why Isaiah is having the muscular, neuropathy, and now the seizure or heart issues.  Hopefully, they will either do the testing right then and there (it's a nice 4-hour trip to Miami) or figure something out and give us some kind of an idea as to what is going on.

The amount of Epis Isaiah has had in his lifetime has been a concern as far as his heart goes.  Seizures?  I don't know, but his previous EEG didn't show any seizure activity and (for some reason) this one does.

As far as Isaiah's masto & allergies, his IgE is well over 3,000 and hasn't shown signs of coming down.  He is maxed out on meds and has even started another adult med to control lung symptoms (it's not asthma, but we're treating the symptoms with asthma meds).  He takes the adult FDA limit dosage for Xyzal - that's pretty much 4 times the amount normally given to an adult.  The other med he is on (for his lungs) isn't supposed to be given to children under the age of 12, but he needed it . . . so, he's on it twice a day.  His dosages have been adjusted, but nothing else has really changed.

On the Autism side of Isaiah :0), he has been put on a medication to help calm him down. :0)  Yes, little man bounces off the walls.  He is now on two meds for Autism symptoms - one to treat anxiety, one to treat his hyperactivity.  :0)  Let's just say, he sleeps nicely at night, now. :0)

As far as my dad, his lab results are showing that he is now in stage 3 renal failure, his blood is thickening (from Waldenstrom's), he has diabetes, and he is anemic.  He falls asleep standing up or sitting down . . . yet, he somehow managed to put lights on the house for Christmas!  Yes, my dad was on the roof!!!!  I don't know how he does it, but maybe the fear of falling to the ground because he fell asleep was enough to keep him awake up there. :0)  He has also been really dizzy and has total hearing loss in his "good" ear (dizziness is from damage caused by Meniere's Syndrome and the hearing loss is from Waldenstrom's).

Other than that, he continues to keep himself busy - he's not the type to sit still for very long . . . unless he's napping. :0}  He is very quiet and a bit on the moody side.  He does talk a bit when he's in a good mood, but gets really quiet (after fussing a bit) when he is frustrated or upset (usually because he gets confused or isn't able to do what he wants).

Overall, though, we are blessed.  Things could be so much worse and they're not.  God continues to bless us with good days and even good moments on bad days.  I have no doubt that He will continue to bring His blessings, joy, peace, comfort, direction, and hope to us - that's just who He is.  I am grateful for the love that He shows us - and for the mercy He brings us to help us get through the difficult times.

On top of that, it's my favorite time of year - the time of year that we celebrate the faithfulness and amazing love that God has for us.  I love this time of year.  It kicks off with Thanksgiving - a time to celebrate how thankful we are for God's provision, etc.  Then, there's the Festival of Lights (Chanukah) - 8 days to celebrate and remember God's faithfulness and protection.  It "ends" with the greatest gift God ever gave us - the gift of Jesus.  I just LOVE this season!  Of course, there is also the love and closeness of family, the great and happy music (I get to listen to Bing Crosby!!!!) and all the movies (my favorites being It's a Wonderful Life, White Christmas, Elf, and It's a Meaningful Life (the VeggieTale version of It's a Wonderful Life). :0)

Since this post has already gotten very long, I will end it with this: what ever you are going through, God will walk with you through it.  His love is enough and He will make sure you have all you need.

Blessings, Happy Belated Thanksgiving, Happy Chanukah (which begins tonight!!!!), and Merry Christmas!

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