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}

Happy Thanksgiving!!!

Thankful

I am writing this post with a bit of a heavy heart . . . and, yet, I'm still not sure if that's how I would put it.

Isaiah's hospital visit has been a month ago already. It seems like it was last week, yet when I think about the tests that were done the day we left, it has been an eternity. Friday, the tests came back. The doctor called and said that he would like to see Isaiah before his next appointment (which was scheduled for January 9th). Initially, he said that the 14th or 15th of December would be good. Then he paused and said, "no, sooner - after Thanksgiving. December 1st?" So, December 1st it is. I know that's just a little over a week away, but it seems like another eternity to wait.

I don't have any details, other than he mentioned that we need to see another doctor, but it will all be discussed at the appointment. I know we have had tests like these done before . . . serious ones . . . but none have ever been discussed like this before - there is a bit of urgency with this one. We have always been given results over the phone or at least a portion of the results. We have waited for the doctor to be paged, waited for a nurse to call us back, an appointment rescheduled to a later date to accommodate the head doctor's schedule, but never an appointment rescheduled for an earlier appointment. The doctor even sounded shaken. It's a bit unnerving, to say the least.

So, why did I name this post "Thankful?" Simply because I'm thankful. There is so much to be thankful for. I'm thankful they didn't schedule the appointment for this week. I'm thankful that the news isn't so bad that we had to make the 3-hour trip over there to receive some kind of bad news before Thanksgiving. I'm thankful that we can spend Thanksgiving here at home and not in a hospital. I'm thankful that God is still in control of whatever is going on with Isaiah's little body, even when it may seem that He may have taken His eye off the situation for a moment. I'm thankful that He never takes His eye off a situation - He never leaves us nor forgets us. I'm thankful that whatever news the doctors may have for us in St. Pete, that God is still our healer, our comforter, our peace, our strength, our joy. I'm also thankful that God is our strong tower, our refuge, and our sanity. I'm thankful for a loving family and for encouraging friends. I'm thankful for such a wonderful little boy who brings so much joy and so much inspiration - I'm thankful for every moment that I have with him.

As always, I will write more when I know more. For right now, however, I have to prepare for Thanksgiving day - there's a lot to do in a little bit of time. =0) We're going to have dinner in our home . . . and then, we get to put up Christmas lights . . . and . . . our tree!!!!! =0) Can you tell that this is my most favorite time of year??? Yes, we are already getting in the mood for Christmas - we are already listening to Christmas music and watching Christmas movies. =0) Hey, c'mon - it is, after all, the most wonderful time of the year! =0)

Thank You . . .

. . . to all who have served and are serving in our Nation's military - and especially to those who have lost their lives. You are not forgotten for your sacrifices to bring freedom and peace to the rest of us. May God continue to bless and watch over you.

Thank you, Uncle Bob, Uncle Raymond, Uncle Jerry (Uncle Cherry) :0), Uncle Jim, Uncle June, Uncle Rob, Uncle Soloman, Ronnie, Aldith, Travis, Al and many more.

"Greater love has no one than this: to lay his life down for a friend." (John 15:13).

Testing, testing . . .

It took me a bit to sit down and actually write this post; not because it was necessarily difficult, but because I just haven't found the time. =0}

Anyway, Isaiah spent the week in the hospital last month (October 3rd - October 6th) with a stay-over at the Ronald McDonald house Thursday evening (the 6th). No worries - it wasn't because Isaiah had another reaction, but it was because Isaiah's doctor wanted to observe him and run some tests (basically, it was what I had written about in my last post).

While I was hoping for an answer as to why Isaiah's reactions are so often and severe, there were no answers. He ended up having a small reaction, which ended the observation period and gave us a discharge from the hospital (his doctors - he had three - were trying to find a way to keep him). Since he had to be given meds to stop the reaction, the observation without meds was over . . . he made it less than 3 days off of meds. =0( This reaction wasn't as bad as it could have been, but without intervention, it would have been anaphylaxis (his lips and tongue were swelling, his throat was itching, he had a headache, a stomach ache, was gagging, he was flushed, and he had those lovely red spots).

Other than that, our hospital stay was an adventure where Isaiah was totally spoiled! =0) The activity cart came by Isaiah's room at least twice a day, but made it around more like three times a day. Every time the cart stopped by, Isaiah got something - a large board game, painting activities, a pillowcase, a toy, something . . . and the RMcD house gave him a large stuffed bear ("Teddy"). He could also order icees (which, when they're safe for him, are a HUGE treat for him). Yes, he had an icee for every meal! =0) On top of that, he had a 47" HD plasma screen TV (complete with cable) that also had movies, the Internet, and games. Mommy and Nai-Nai also had a TV, but it was more or less a 17 " screen with cable (no, mommies weren't excluded from the spoiling - I was given hot coffee and breakfast every morning). =0) By the time we left, we had a few extra bags to carry to the car. =0)

They also had an activity time where the kiddos could leave their rooms to go to the Children's Auditorium, if they were allowed/able to. While there, children could play the piano, play video games, shoot some pool, paint/draw, or play with various toys. They even planned a bingo and trivia time where the kiddos could win prizes - even the kiddos who weren't able to leave their rooms were able to play, thanks to their TVs.

Then, there was also music therapy, an awesome play room with a gorgeous view and a jukebox, and a special visitor. Yes, Isaiah got to meet . . . Ronald McDonald! =0) I don't know if Isaiah really knows who he is, but he was still excited to see him. =0) Ronald also brought Isaiah a toy

- they really go out for these kiddos. Then, there is the outdoor pirate ship and exercise time (Isaiah didn't get to participate in that one because of the heat).

In some ways, the hospital tried to make things as fun as possible to make the stay more of a vacation than a hospital stay . . . but there are still the IVs, the monitors, and the looks of pain and despair on little faces. There were so many heartbreaking stories - neighbors to Isaiah's room, to be more precise. Our stay on 8 South will not soon be forgotten.

As far as things with Isaiah go, his heart rate bounced somewhere between 56 and 148. Yeah, a bit scary. The alarm was difficult to get used to, but it would scare him when his heart rate would get low, which would make it beat a bit faster (usually around 70/80). Basically, I was told that he has an irregular heart beat, but it may just be normal for him. However, it never really acted up for them - he becomes very tired and pale when it acts up.

As far as the testing, the tests earlier in the week came back normal or the same as they have been (his eosinophils stayed the same and are still very high and some of his allergies have actually gotten worse - corn and dust, to be exact). He had more labs drawn before we were discharged Thursday evening (yes, evening . . . 7:30 to be exact). Hopefully, we will get those results sometime soon, but we're not sure when. The doctors are looking for a rare autoimmune disorder, so the labs had to be sent to a lab where the tests could actually be done - they were sent to a Jewish lab somewhere here in the states.

Just this past week, Isaiah had nerve testing done - last Tuesday. He had both nerve tests done: an electromyogram (EMG) and a nerve conduction velocity test (NCV). I am very proud of Isaiah and completely amazed at how well he did. Not only did he have to stay still (thank you, i-Pod), but he also had to stay still through all of the shocks. He didn't cry at all. He didn't even make a noise, apart from a small "ow" with the very last shock (nerve conduction tests use electrical shocks to test nerves, just in case you were wondering . . . and yes, they can be very painful, especially in the more sensitive areas). The doctor initially thought we wouldn't be able to do the entire test on Isaiah, however, Isaiah made it through all of it! The doctor smile and told us that he has had grown men jump, cry, scream, and threaten him because of these tests - he was impressed by Isaiah's willingness to just lay there and take whatever the test threw at him.

We were given the test results for the NCV and EMG. It looks like Isaiah has neuropathy. It's not severe, but it's definitely there. What does that mean? I don't know. We will have to wait and see Isaiah's regular neurologist to figure out what this means for him. What I do know, though, is that Isaiah's regular neuro seems to think that Isaiah does not have a minor form of CP, but something else (sheesh, is this some sort of a repetitive response???). Since Isaiah has no reflexes/hyporeflexia (except for a small bit in his ankles), CP is not causing the muscle and tendon tightness Isaiah is having (CP causes hyperreflexia/exaggerated reflexes). So . . . is all of this connected to everything Isaiah is going through???? No clue. Maybe the tests the allergists ran in the hospital will give us more information . . . or maybe the neuro will have an idea. We'll have to wait and see, as usual.

Since our trip to the hospital, Isaiah's body is finding it difficult to readjust (Isaiah had to be off a few meds for one of the tests). He has had weekly episodes, though we haven't had to use the Epi with these reactions. These are just the usual masto reactions - tummy pain, leg pain, nausea, vomiting, flushing, itching, mood swings, the red dots, swelling . . . I'm beginning to wonder if this is our new "normal". I surely hope not - I hate seeing him go through all of this. He's such a trooper, though, and manages to smile through it all.

I know all of this seems so overwhelming, but it really isn't. There is a lot going on, but it's nothing all that unusal for our household - it's our "normal" ("normal" just needs to be readjusted every once in a while). =0) It's not depressing, though it can be frustrating at times. Honestly, we just do what we have to and take one step at a time - as my mom says, we just live like we're supposed to . . . are all these things really supposed to bother us? There's no time to sit and think about the "what if's" or "if only's". From the outside, it looks like our life is just one glob of chaos. However, it's not that way at all . . . I can tell you, I would have no idea what to do with myself if things weren't the way they are! =0)

Even in the roughest times - the times where Isaiah is going through a reaction of some kind - it's comforting to know that in all that we are going through, God has never left our side and that everything happening is within His control. He's not going to leave us to deal with the uncertainties on our own - He's right here with us and He understands when things are frustrating and painful for us. I can't give you an answer if God had all this planned for us - trials and all - but I can say that He's not allowing us to go through this for nothing. I know that there is something in store, a reason why Isaiah and my dad (and my mom and I) are going through this . . . even though we don't know what that is. =0) There is actually a little peace in not knowing why . . . I may not want to know! =0)

Anyway, I will keep you posted as I hear back from the lab/labs and doctors. I am hoping that the tests will come back this week . . . I'm trying really hard not to be the psycho mom that calls daily for test results! ;0)

God is good!

My Dad . . .

I know you are wondering about my dad . . .

Things with him have been going okay - not great, but okay. He isn't feeling his best and hasn't been able to mow the lawn for himself for a few months now (my nephew steps in and helps out). He is in quite a bit of pain and has also been having nose bleeds (one of the symptoms of Waldenstrom's). As far as lab work, his labs are saying that the disease is progressing, he has stage two chronic kidney failure, and he was just diagnosed with diabetes. It's so frustrating to see him go through all of this - especially when he becomes frustrated because he can't do what he wants when he wants . . . or forgets what he's doing altogether.

On the memory front . . . he gets quite confused at times. He gets lost in town and so he rarely goes anywhere unless he is with my mom or myself (and we drive most of the time). He doesn't like to do too much by himself and won't do too much without my mom by his side. It's kind of cute, but at the same time, so uncharacteristic of him . . . and it drives my mom nuts! =0)

He sleeps a lot, but does try to stay busy - it's how he ignores his pain. He waters and cares for his lawn several times a day (boy, I hope nobody from the water division is reading this). ;0) By the way, you're not supposed to water your lawn daily in FL. Oh well, I'd like to see one of the officials explain that to my dad. =0) He enjoys spending time with the birds and squirrels - he has named and recognizes the majority of the squirrels that visit our bird feeders . . . or squirrel feeders (my dad built feeders and houses just for the squirrels). =0) He also spends time with Isaiah - he loves getting Isaiah to say funny phrases to us.

Dad's moods are changing, too. He's not as talkative or friendly. Not that he's mean, he just doesn't talk. When we try to talk to him, he is very short and seems to stare off into the distance at times. Sometimes, it's because he can't hear very well. Other times, he is in his own little world. Much to my chagrin (wink-wink), he loves watching his blue grass/country shows. Insert shivers here - two types of music I cannot stand! =0) However, in describing my dad's personality, you cannot leave his love for those types of music out. It's totally part of who he is.

At times, he feels alone and forgotten - my dad thrived on being needed and being useful. Since he can't hear well, he feels cut-off from conversation and is afraid of talking because he doesn't want to talk to loudly or doesn't want to misunderstand the conversation - it embarrasses him. There are times where he questions his relationship with God - has God forgotten him or is he being punished? I know that he knows the answer to those questions, but it still bothers him. Going to church, for him, has been rough - he can't hear what's being said, he's no longer needed or feels useful, and he doesn't feel comfortable talking or singing (my dad used to love to sing). I wish I could make it all better for him or help him find a sense of peace and comfort in this time in his life.

Thank you for your continued prayers for my dad - he needs them! He is frustrated and scared, though he wouldn't dare tell you - that's just my dad. He is in a lot of pain, which won't get any better without your prayers. There are no pain medications that will touch the pain he experiences - he has had too much nerve damage and cannot take some of the meds that barely help him because of side effects. I know God is listening to him and trying to bring comfort and peace - we can see that, at times. My dad knows, too . . . Please continue to pray for healing, strength, comfort, and peace . . . and for a renewed sense of joy, purpose, and meaningfulness for my dad.

Blessings