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!

Isaiah-Friendly Laundry Soap :0)

I posted this recipe a while ago, but I had a few people asking me for detailed instructions on how to make this stuff . . . so, here it is. :0)  I really like this stuff and it lasts a lot longer than a regular bottle of laundry detergent (and it can be cheaper, too).  

This soap is great for people with skin sensitivities (like Isaiah) because you use the soap that your skin tolerates.  Most of the time I use Vanicream, but recently I am trying Fells Naptha (just because it cleans the clothes a bit better).  The Vanicream cleansing bar used to be a bit pricier, but it's now only about $3.49 per bar at Walgreens.  Fells Naptha is $.97 at Walmart . . . and you use only half of the bar (it's a big bar).  Vanicream has no perfume, so there is no scent to your clothing - you clothes come out of the wash smelling fresh.  With Fells Naptha, there is a bit of an odor, but (surprisingly) your clothes don't really pick it up (especially after a second rinse).  I have also used Ivory, but Isaiah breaks out from the stuff - you can use whatever bar of soap you prefer.  I do not recommend anything with olive oil - your clothes smell good at first (and are amazingly soft), but you will smell like B.O. after a while.  You can even use liquid soap (about 2 cups of it), just make sure to reduce the boiling water from 6 cups to 4 cups.  
 To protect Isaiah even further from anything that might be irritating to his skin, I also put our laundry through an extra rinse cycle. 

Okay . . . so on to the recipe.  Here's what you'll need:

A 2 to 3 gallon bucket with a lid (I found mine at Walmart for about $5.00).  I found a lid with no writing or decorations on it so that I could write the recipe on the lid with a permanent marker - that way you'll never lose it, even if you have to rewrite the recipe from time to time.

1 bar of soap of your choice (or 2 cups of liquid soap of your choice) - we use Fells Naptha ($.97 at Walmart) or Vanicream ($3.49 at Walgreens).

1 box of Borax.  The only brand I have found is 20 Mule Team and it costs maybe $3 to $4 at Walmart or Target (yes, one of Isaiah's favorite stores carries this stuff)

1 box of Washing Soda.  This can be difficult to find, but it works MUCH better than baking soda.  Our local Walmart has finally started carrying the stuff - it's about $5.95 per box (it holds about 5 1/2 cups).  If you cannot find Washing Soda (by Arm & Hammer - it is also called soda ash), you can make your own using baking soda (fill a wide baking dish/pan with baking soda, heat it at 400 degrees in the oven - stirring occasionally - until it becomes soda ash . . . you will notice a difference in appearance - by the way, I found this neat trick here).  Or, if all else fails, use baking soda (a large bag/box can be found at Walmart for approximately $3.00).  :0)  

Lots of water.  Yes, tap water - it will be just fine to use tap water. :0)  You will need about 2 gallons of water for this recipe (6 cups boiling water, 4 cups of hot water, 1 gallon plus 6 cups water).

1 large, tall pot.  It will need to be large and tall so you have more time before the mixture boils over. :0)  

Essential oils or fragrance of your choice - this is completely OPTIONAL. Isaiah doesn't do well with fragrances, so we omit this ingredient.




Ingredients:

1 bar of soap, grated (or 1/2 Fells Naptha, grated / 2 cups of liquid soap)
6 cups of boiling water (or 4 cups, if you're using liquid soap)
1 cup of Borax
1 cup of Washing Soda (or baking soda . . . it's up to you - there is a difference)
1 to 2 Tbsp essential oils or fragrance (OPTIONAL)
4 cups of hot water
1 gallon (approx. 16 cups) plus 6 cups of water


Preparation:

Make sure you have your bucket ready with 1 gallon plus 6 cups of water just in case your mixture starts to boil over.  Trust me, you will be glad you have that bucket ready when the foamy laundry soap monster rears its ugly head . . . :0)  Laundry soap scorching on the hot eye of your stove does not, in any way, smell good . . . just so you know.  :0)


Directions:

1. Grate the entire bar of soap (or 1/2 the bar of Fells Naptha).  Sure, you could stand there forever waiting for the entire bar of soap to dissolve in all that water . . . grate the soap. :0)  I have used an onld fashioned hand grater, but who wants to do that?  I have found that my hands are much less achy when I use a food processor.  :0)


2. Bring the 6 cups of water to a boil.  Turn off the heat and dissolve the grated bar of soap in the water.  If you want to use liquid soap, boil 4 cups of water, turn off the heat, and mix the liquid soap in the water. :0)



3.  Once the soap is completely dissolved and mixed with the water, add 1 cup of Borax.  Stir until completely dissolved (you can add up to 2 cups of Borax if you'd like, but 1 cup does just fine).



4.  Slowly add 1 cup of Washing Soda (soda ash / baking soda) to the mixture - SLOWLY.  Make sure it dissolves, but at this point you may notice the mixture expanding quickly, so have that bucket ready.  It makes a huge mess if you're not watching it.  I haven't noticed this quite as much with Fells Naptha, but I have noticed it with the Vanicream-baking soda mixture (it's a lot like mixing baking soda and vinegar).  Boy, is that a mess and half to clean up!  On the bright side, you'll have a nice clean stove when you're finished. :0)

5.  Add 4 cups of hot water and mix.  OPTIONAL: Add 1 to 2 Tbsp of essential oils/fragrance to the mixture and stir.

6.  Add the soap mixture to 1 gallon plus 6 cups of water (if it hasn't already been added at this point because it has turned into the puffy laundry soap monster).  Mix well (that laundry soap monster will behave after being added to the bucket).  


7.  Let the laundry soap set overnight or for 24 hours before using.  You will need to stir the mixture before using it because it will either be one big gelatinous blob (with washing soda) or a thin layer of blob on top of a bunch of liquid (if you used liquid soap/baking soda).  I usually mix it the first time with my hands to make sure I get all the clumps.  After this, you will need to mix it with a spoon before using.  If you use the washing soda, the mixture will be a thick liquid - almost a gel.  If you used baking soda, it will be a thinner liquid.

Use about 1 cup for a large load of laundry (3/4 of a cup for a medium load, 1/2 cup for a small load).  For extra large loads (depending on what your washing machine can handle), I have used up to 1 1/2 cups of laundry soap.  

Have fun! :0)

Happy Birthday, Little Man!

I can hardly believe it; you are seven years old today!  Seven years ago, I waited for you to take your first breath - it seems like yesterday.  In other ways, it seems like a distant memory.  You have amazed me with what you have already accomplished - I can hardly wait to see what you will accomplish in the future!  You are such a sweet and happy little guy.  You make the room a bit brighter the moment you walk in; you always bring a smile to my face and warmth to my heart.  You mean the world to me.  Happy birthday, sweetheart - I love you to infinity and beyond!

Since the original video wouldn't upload . . . :0}

This photo slideshow created with Smilebox

Happy 50th Anniversary, Mom & Dad!

Over the past 50 years, you have helped each other carry life's burdens, sharing in life's joy and sorrow.  You have seen many changes and faced many challenges - you have so many memories together.  Thank you for all the values and morals you taught us - you have given us an invaluable lesson in life and love, what it takes to be a couple, and what it means to stick together as a family.  I love you guys!

Autism IS My Superpower!

Can you imagine hearing the words, "your child has autism?" In a split second, life - as you know it - has changed. For a different family, every 20 minutes, tomorrow will never be the same. In the United States alone, 1 in 88 children are diagnosed with autism (up from 1 in 110 children).

I remember hearing those words, though I already knew. I felt breathless. I cried the whole way home from the doctor's office. I called a good friend of mine, who also has a child with autism, and she reminded me of one very important thing: Isaiah didn't change - my perspectives had. Isaiah was the same little boy after the appointment as he was before the appointment - and that child was spunky, beautiful, brave, strong, quirky, funny, etc. In many ways, autism has made Isaiah who he is. Autism was already a part of his wonderful personality. Autism is his superpower. =0)

The reality is, though, some families facing this diagnosis do "lose" their children to the curtain or veil of autism. The person they were becoming seems whisked away and silence and blank stares sometimes replace their talkative and expressive selves. Don't get me wrong - autism isn't a death sentence and it's not the end of the world. But it does hurt to see your child drift or be snatched away - the child that you had known. In some sense, your child has disappeared.

Autism is one disorder that has fascinated me for years - I have had the honor and the privilege to work with several children on the spectrum over at least the past ten years. I love spending time with kiddos with autism - they are amazing and view the world in such a unique way. Sometimes, their perspective is scary and yet it can be beautiful. I love getting glimpses into the world as they see it - as my child sees it . . . even if it is sometimes perplexing. =0) I also love seeing their light-bulb moments, where they have learned something they have been working so hard on to master, and I love the challenge of helping them figure out and deal with the strangeness of "our world".

As I have mentioned in an earlier post, I am taking part in an event called Walk Now for Autism Speaks (it's coming up this Saturday). You have an opportunity to participate as well, either by walking with us or by supporting Team Super Nova (yes, Isaiah's self-proclaimed superhero name). =0) By participating in this event, you are helping to change the future for individuals with autism. By walking, you are getting us one step closer to finding what causes autism, how to prevent (and I use that word lightly) and treat it (through therapies and ways of teaching), and even helping them find their voice. It's not just about a cure (yes, there are some who long for a cure so they can hear their child say "I love you"), but it's also about helping families and individuals cope with autism in a very overwhelming world. Until we find the solution or the missing piece of this puzzle, we walk to find answers and raise awareness about autism.

It's not to late to join our team - either by walking with us or by donation (help us reach our goal)! =0) You can find links on my blog (you can click on any of the Walk Now links or the word "autism" in this post) and even here to my donation page. We have a wonderful team so far - but there is still room for you to join. Even if you cannot walk with us, your name will be added to a list of people who are walking with us by financial support. For those who have already donated - thank you, again!!!!!!

Happiness is . . .

learning to love the beach for the first time. =0)

Isaiah used to hate the beach - it was a sensory overload for him. However, this time, he found joy in chasing the waves.

Light it Up Blue for Autism Awareness

Light it Up Blue - April 2, 2012

www.lightitupblue.org

Okay, well, since it's late, this will be a very brief post. =0) In addition to lighting it up blue (as in lighting up the outside of our house blue for Autism awareness) I will also be walking on April 21st for Autism Speaks. It was an awesome experience last year and I am excited to attend again this year - hopefully, this time, with Isaiah (weather/outside temperature permitting). If you are interested in walking with me (you can join our team), contact me and I will give you more information. You can also support me as a walker - by clicking here: Team Super Nova. If you have trouble clicking on the link, just copy & paste/type in this address:

www.walknowforautismspeaks.org/tampabay/superisaiah

If you receive my posts via e-mail, and you happen to lose this post . . . no worries - I will have link on my page as well. =0)

=0) "Super Nova"

Wow, it has been a long time!

It's not that I haven't had anything to post about, it's just that I haven't had much time to sit down and actually write a post. :0}

Since October, Isaiah continued to have some form of a reaction on an almost weekly basis (sometimes less than a week would pass before another reaction). Each of these reactions

involved vomiting as well as fatigue, flushing, itching, leg pain, headaches, slurred speech . . . it wasn't fun and Zofran became one of our closest friends (as well as one of those putrid, pink hospital pans that Isaiah carried around with him). He even had one of these episodes on Thanksgiving Day.

On December 5th, we had another appointment with All Children's AIR clinic. We found out that the results were elevated - his urine histamine levels, as well as his norepinephrine and a few others. All of these were being looked at to try and determine if Isaiah has a tumor on one of his adrenaline glands (located on his kidneys). This type of tumor can exist for years before it's found. Since Isaiah's levels were

elevated, but not quite high enough to indicate the presence of this tumor, we had to repeat the test. This means more blood work and more convincing my son that peeing in a special cup/bottle is okay . . . as well as convincing him that it is okay to store that big, nasty bottle in the refrigerator (because cups and bottles are for drinking and pee doesn't go in them or the refrigerator). :0)

In addition to repeating the testing, the team of doctors decided to increase Isaiah's Zyrtec and Atarax - both are to be taken three times a day. His Flonase was also increased to an adult dosage to help him with his nasal issues. Of course, all of this means that we have to return to ACH's AIR clinic every six weeks for a while - except for the next appointment where we would go over the test results . . . that would be in January.

The increase in meds seemed to do the trick - he didn't have weekly reactions for a while until a week before Christmas and then another really bad episode the day before New Year's Eve (which required a trip to the ER). Thankfully, we had a reaction-free Christmas and enjoyed spending time with my cousin, Nancy.

When we returned to ACH in January, the doctors were still concerned that Isaiah's counts were still high - in fact, they had increased. STILL, they are not high enough to say that he has this tumor . . . which was now given a name - a pheochromocytoma. They took his results to endoc

rinology (literally a few steps down the hall from the room we were in - they share the same floor) to get an opinion. Endocrinology said that we didn't have to make an appointment with them yet, but they will follow his case in the event that further testing (scans) would be needed. At this time, the test will not be repeated, we will wait to see if things improve or worsen.

Our next scheduled appointment??? February. :0}

Somewhere in all of this, Isaiah had an appointment with neurology, had an ENG and nerve conduction testing that determined that Isaiah has peripheral polyneuropathy. What does that mean? Well, we still don't know, bu

t it explains the pain in Isaiah's legs and we were told it is more than likely progressive . . . and may explain Isaiah's hypertonia (over-toned muscles) in his legs and hypotonia (under-toned muscles) in his upper body. Isaiah is no longer considered to have cerebral palsy (spastic diplegia) but something else . . . which means more testing because neuropathy is a symptom, not a cause.

I want to say, very quickly, how proud of Isaiah I am. During all this testing (the ENG and nerve conduction testing, especially), Isaiah has not once cried or thrown a fit. The ENG and nerve testing are painful - even adult manly-men complain about how painful it is (one test involves long needles inserted into your muscles . . . both tests include electrical currents running between two needles/pads). The last bout of blood testing involved 8 tubes of blood being taken and one test being repeated. Isaiah is my hero.

A few weeks ago, Isaiah had another reaction. This one was different and was . . . well, puzzling. Isaiah became really aggressive - really aggressive. The words coming out of his mouth made no sense whatsoever and he was screaming. It wasn't just one meltdown (??? - I don't know what to call it), but two less than 5 minutes apart from one another and lasting about 20 to 30 minutes each (I have no idea how long I was holding him, but I was beyond exhausted when it was over). After Benadryl and other meds were given, he calmed down and acted like absolutely nothing had happened.

The next day, Isaiah was completely flushed - head to toe - and breaking out in rashes . . . then petechiae . . . then bruises. I have never seen anyone break out in bruises before. It was one of the weirdest things I think I have ever seen . . . and quite scary.

Again, meds were given and Isaiah took a nap. I did notify Isaiah's doctors, complete with pictures (one of Isaiah's doctors received the e-mail and called while on vacation in Vietnam . . . AWESOME doctors). No emergency appointment was necessary since we had an appointment just a few weeks away.

Now, on to yesterday's appointment . . . The neurology labs aren't back yet, so that wasn't discussed (did I mention that one of these labs costs $18,000?!? and it's not accepted by insurance . . . yeah, I'm still working on getting that one covered), but the neuropathy was discussed. We talked a little more about the strange episode a few weeks before and it was decided that we did not need any further testing at this point - Isaiah has had tests to look at clotting issues in the past, and nothing unusual showed up. However, Isaiah's meds were increased . . . again. Instead of Zyrtec, Isaiah was switched back to Xyzal (YAY!!!!) and now takes the adult dose 4 times a day. His Atarax dosage was also increased. We were told that if this does not work, we are looking at something far more serious for Isaiah. What that is, I don't know . . . I didn't ask. More aggressive treatment??? Maybe. A new diagnosis? Probably. It's just too much to think about at this point . . . I just want to at least get through these next six weeks before I think about

all of that.

By our next appointment with the AIR Clinic, Isaiah's neuro labs should be back . . . except for maybe the $18,000 one (it depends on insurance and the doctor's suggestions). And, yes, you are reading that correctly (no, it's not a typo) . . . the test costs $18,000 and my insurance considers it to be experimental and they won't cover it. The lab (which is in Georgia and the ONLY lab in the US that runs this test) does not accept Isaiah's secondary insurance. Whatever happens, hopefully, we will find some answers to explain the medical mystery of my son. These tests are not going to mean easy answers, but at least we may have better treatment for his legs/upper body issues that may also explain the odd symptoms we're seeing and reporting to Isaiah's allergists (yes, we know a lot of what is going on is outside of the allergy dept., but they are doing their best to help us get to the right doctors).

Our next appointment is in six weeks . . . I think it's March 29th (I'm so thankful we have the technology of cell phones equipped with calendars . . . calendars that notify us of upcoming appointments). :0) Right now, we are relaxing . . . and Isaiah is happily stimming (self-stimulating - the repetitive movements seen in people with Autism) over his Star Wars Lego video game (hey, he totally needs a break). :0)

I have another post to write about my dad . . . and, yes, it will be before several months have passed. :0}