The day after....

>> Friday, August 23, 2013

Last night was an almost sleepless mess.

Aside from the baby being up and down, Bug got up at 4:17am, walked into his bedroom, crawled up on the bed and tried to go back to sleep. He did sleep for a short time. He was awake again 5:55am and then up for good at 6:40am.

All of this WITH Melatonin. I can only assume it was the Benadryl they gave him before the IVIG. It does that to me as well. I have once been mostly awake for 72 hours taking two doses of Benadryl. The most curious about him being up is that he SHOULD be seizing a lot, and he isn't. In fact, he is playing and smiling and seeking out my lap.

Which means he is also walking on the foot he is supposed to stay off of. Sigh. Hopefully he will get a cast today but the jury is out on that one, the Podiatrist is booked. The only way he will get it is if a nurse does it. Let's hope this Doctor has fabulous nurse, otherwise I am afraid he will make it worse. :(

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The first.

>> Thursday, August 22, 2013

The arrow points to the boo boo. Do you see it?
Is it just me or was that last post a cake walk?

Compared to 4 kids with one Mommy in the ER it was.

That's right. ER trip. Alone with the children because Bug fractured a bone in his foot.

Dumb bleeping luck that one is. But it was also NOT a result of a seizure. Oh hooray?!?

He was getting out of the van...we've had the car for over a year...he's not new at it...and he seemed to...stumble out of it. I don't know how else to put it. Taylor walked around the car to get him (he tried to go in front of the car but there isn't room) and I noticed he was walking oddly. I got closer and he was limping. He has sprained his knee before so I knew to watch him.

And I watched him. For an hour. Watched him walk on that toe, but would not put the heel down. He was with the other foot. Hmmm.

We took Tay to Karate and I called Glenn. He validated my decision to watch him. So we drove home.

I got everyone out of the car and carried Bug inside. When I set him down and watched him, I knew we were all getting back into the car.

We arrived at the ER, all five of us and proceeded to take over the joint. It was a full house but they got us in, got Bug an Xray, they held the baby while Ava screamed, and had our diagnosis of a buckle fracture of the third metatarsal, in under an hour. But then we waited 40 minutes for the discharge paperwork. In that time period, Ava managed two suckers, 4 melt downs and one iPad removed from her sticky hands. It was ugly. Bug sat serenely on the gurney. That part was awesome!

The fracture is so small they weren't sure, at first, if it was an anomaly.  But, he goes to a Podiatrist tomorrow for a cast. They are sure now.

I wanted a cast last night, because I knew he would not stay down. Today, I was thrilled he didn't have it on.

Today, was IVIG day. He was a wiggly little trooper. Even through 2 IV's, he was a champ. But keeping him contained on the bed through the infusion...was not awesome. For 6 hours. I'm sore.

So now, we wait and see. And we go back in 4 weeks. Give or take, and do it all over again. Daddy will be home to go with us next time.

Hell of a 24 hours for Bug...makes mine look not so ickie afterall.

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Oh, for the love of...

>> Wednesday, August 21, 2013

The last 48 hours have been very busy. Good, but busy.

First, Bug had a wonderful appointment with his Neurologist. Bug will be doing IVIG tomorrow, he may be changing medications in a few months, depending how the IVIG goes and he WILL be doing some kind of supplements if his second set of blood tests comes back as wonky as the first. And a few other things...awesome things...but about those later.

Yesterday was Bug's first day of school for the year. He made the van, maybe his LAST trip since I was told that he would be riding a Bus, a big shiney new bus with A/C in the BACK of the bus, by the end of September....so what does he do until then? He can't ride a bus with no A/C. He will seize. But he made the bus that day and all seemed good. One seizure before the van but recovered nicely.

I took my sister back to Ogden and came back in time to not be too late to my meeting. Ava was less than cooperative but it worked out and I didn't look too unprofessional. I hope.

Aiden, Ava and I picked up Taylor and waited for Bug. He got off the van and I noticed dried blood in his nose. No notes. Shari had no idea what had happened. He has been seizing 5-8 times a day and NO yellow papers? SOMEONE missed SOMETHING. Oy. All three had noodles for dinner and Bug had his AND some of Ava's. Cool.

Three kids got in the bathtub and two got cleaned, one climbed out because his sister was pissing him off and he had 2 more seizures. So...I saw 3 seizures...how many did I miss while he was at school?

Ava went to bed, followed 30 minutes later by the older two. The youngest...smiled. And smiled...and laughed...until midnight. Yawn.

Onto this morning. Aiden slept until 5am when he ate and went back to sleep. At 7am I heard (and felt) THUD. I looked at the screen and saw Bug launch out of bed (there is a delay in the video). I threw on my robe and went up to see a twitchy, but not seizing, Bug on the floor. Ava was standing in her crib saying: Mama, Mama, Mama...blah blah blah...Mama. Taylor perked up: Morning Mom! Hi Tay, it's time to get ready for school.

I carried Bug, Ava tore into the water bead things Tay HAD to have for Christmas and began snacking and we eventually made it downstairs while Ava sang the theme song to SpongeBob. Got it: Put in SpongeBob to keep her occupied.

I medicated Bug, put on his helmet and I rode Tay until she got ready. Changed two diapers and got one lunch ready. Three kids were dressed and got into the car and one sleepy baby was awakened and changed and smiling, put into the car. Tay made it to school two minutes late. Hooray! Not bad.

Forget this breakfast thing...I went to McDonalds and got the meat-eaters 4 sausage biscuits. Ava ate two of the sausage patties and threw the biscuit parts on the floor. Bug ate maybe a half of one and refused the rest. Uh oh. So I let them out, fed the baby and called PCMC. For twenty minutes.

'We don't have a record of your appointment for tomorrow. Hold on and I will get this worked out.'

OK, can do...hold music.

'Annette? Still there? I am calling another nurse' 'Yep, I'll wait'.

Ava: Mama?

Me: Are you poopy?

No.

The smell says otherwise. I hold the phone with my shoulder and change her diaper. She leaked. One outfit down. Aiden begins to wiggle next to me. I get Ava up and pick up Aiden with the phone still on my shoulder when I hear: Still there? And then...some explanation of something that I missed because at that moment...Bug dropped his toy, his very heavy, musical toy on my foot. I did not swear, I did not drop the baby or the phone. But I DID almost cry. It hurt.

James comes on the phone and explains all is taken care of and we are scheduled! He was charming and apologetic and it was great. So I limp into the bedroom and get Ava another outfit while talking with James. I said some weird things, I think, but all is well.

All of us get into the car again and off to Bug's School. We get there, I wear the baby and hold hands with both Bug and Ava. We walk down the hall and his classroom is empty. We walk to the PE room...and it's empty. We walk to the sensory room...and it's empty. We walk to the playground...yep...empty. We found them in the Library and Bug LAUNCHED to get away from me. I think he likes school.

I update the Nurses about no more mid day clonazepam, we sign Bug in and head home. Oh, I left out the part about Ava screaming her guts out at Bug's school. It was less than charming.

So we are home, Aiden is asleep and Ava is making explosion sounds with her mouth with playing with a power cord. Wait...what? Be right back.

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Typical...

>> Friday, August 2, 2013

Counting to 20 and breathing slowly before I pick up the phone.

Bug is supposed to have IVIG at Primary Children's Hospital. The always fabulous Meg, from Arkansas, has been trying to arrange it and this is the course of events:

Called PCMC and no one knew where to direct her.

Emailed me and I pointed her to the RTU after conversing with some other parents.

She called the RTU and they told her that Dr. Frye would have to call and talk to a Doctor there to oversee his treatment since Frye does not have admitting privileges in Utah.

Dr. Frye calls the RTU and the Charge Nurse tells him that she has no clue who could help. Or something to that effect.

I email PCMC and ask what we can do.

I am told: Dunno

I whine a little and my email is forwarded.

I send my email chain to Glenn and he agrees we should go back to Arkansas.

I cry.

In 200 seconds or so, I may be calm enough to call someone but to what end? This happens all the time with us! Why? Just why?

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Taking the time to remember why

>> Thursday, August 1, 2013

When your child has a chronic condition, so often one becomes so fixated on finding the solution that all they see is the next possibility, or the next treatment.  For parents with genetic conditions that arise at birth, or before, they cherish every day, they never became complacent about the childhood their child experiences, they work everyday to ensure that they have another day.

After getting the blood test results yesterday, I began researching. I came across things with titles like:

Disorders of Organic Acid Metabolism - The cause of isovaleric acidemia is a congenital deficiency of isovaleryl-CoA dehydrogenase, which mediates formation of 3-methylcrotonate

No kidding.

So, this morning I needed to remind myself to stand back and enjoy the child he is, as much as the child he was. This little boy, is so close to getting the help he needs to feel more like himself than he has in years. We are excited, and we are scared. This let down could be epic, if the treatments don't help, and so, we keep it in check and we remind ourselves that we have worked for years diligently and we are confident that we have done our best. Now...the medical community hasn't but that is another post for another time. Not now. Now, we smile at what was, what is and what may be.

And I post pictures.

Bug used to like to hit things with sticks. At restaurants, he would use the silverware, or the straws and he would tap on the glasses or the plates. It was both cute and annoying. So, for Christmas of 2005, he got a drum set. He broke that in 2 hours.

He then got another, heavier duty one, and that one lasted a week. We moved to this 'real' one a month or so later and he loved it! He played it everyday for months! And then...one day, he didn't. One day, he picked up the sticks and played for a few minutes and then, he never touched them again. That was the beginning of the regression, of losing our boy, of getting a new boy in his place.

These drums...are still on our basement. Pathetic isn't it? We can not bring ourselves to throw out something he loved to much. One day, he may play them again. One day, he may pick up those sticks, and then again, he may not. I have no doubt that one day these drums will no longer be in the basement, but for what reason, is yet to be seen.

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What a Seizure looks like (Graphic Content Included)

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Seizure Tracker.com

Seizure Tracker.com
Free online tools to provide people living with epilepsy and their doctors with a better understanding of the relationship between seizure activity and anti-epileptic medication dosages. Reports generated on SeizureTracker.com include detail graphing capabilities and are easily sharable with caregivers.

Diamond Potential Awareness Award

Diamond Potential Awareness Award
Thank you Holly at Diamond Potential for this award. Awareness leads to understanding and acceptance. And let's face it, we all need to feel accepted for who we are. The battle has just begun!

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