Feeling Female

Wow, today is such a weird day.

I am especially emotional, and no, it's not that time again... I don't know what is wrong with me.

First, our second nurse started today and I'm having very mixed emotions. I want my buddy, my Mr. Mumbles, to go with me everywhere. I want to take him with me to the store, to Hannah's school, to the gym, to church, out to eat at a restaurant. I want him to live a normal life. I want him to be okay. I want to be his full-time mommy without someone else coming in to help. I want to know I'm doing right by him. But mostly, today, I want to cry.

Oh. My. Gosh. What in the heck is wrong with me?!!

Two weeks ago, I was feeling pretty good. Hannah's school is awesome. She's doing so well. We also have her in piano and dance and she's loving that too. And we started paying for private therapy sessions for Jenna. I was/am really excited. Watching Jenna with the therapist is like witnessing magic. This girl is so good with Jenna. Today, however, Jenna gave the girl a run for her money and I kept cringing behind my hand as I sat in the corner and let her do her thing.

Other things have been stressful, like the viruses and strep running through our family, and it seems like we can't break free of the sickness/pain lately. And some of it seems totally unnecessary. For instance, per the neurologist's suggestion, we started trying to wean Cohen off his Neurontin (prescribed for pain). This stuff has been a miracle for him. He went from writhing in pain, screaming in my arms, to snoring within ten minutes of getting his first dose. Later that same night, he slept through the night for the first time in months - maybe ever. Shortly after, he started crawling and then a few months later, walking, when previously he would only cower in the corner and suck his thumb and cringe when anybody'd try to touch him. It was so heartbreaking and frustrating at the same time. When the neurologist prescribed this medicine for Cohen, he had his doubts. He wasn't sure if Cohen's screaming fits at night were because of pain or maybe just a paranoid parent's inability to cope with colic, so he basically said, "OK mom, let's try this drug. If it helps him, we'll know it instantly." Yeah, guess so.

So he's been on this drug for a year. At our last appt., the neurologist said let's wean him and see what happens. Well, we saw what happened and it wasn't good. Not at all. He started the same thing all over again. Waking up in the middle of the night screaming hysterically, writhing around in my arms, digging at his body incessantly. I am not exaggerating. So I leave a message for the neurologist and I finally get a call back. First thing out of the nurse's mouth?

"Doctor says to keep weaning him off the medication because it is NOT used for MOODS."

Oh no she didn't.

Not for moods? Not for moods!

Who said a darn thing about moods? Since when is writhing and screaming and digging at yourself like crazy a "mood?"

Oh. My. Gosh. What in the heck is wrong with this nurse?

So I calmly, but firmly, retell her what I said in the message. About his pain. Etc.

She says Neurontin is not for pain anyways. I'm confused, I tell her. What is it for?

Well... it's for seizures and... (a small pause)... leg movement. I could hear the "take that!" tone in her voice. Seriously.

Then why was it prescribed to my kid for pain? And why do all the articles I read about it and all of the drug info I've seen and all of Cohen's other specialists say that this stuff is for NERVE PAIN??? What in the heck? Why would this nurse discredit her own doc's reason for prescribing a medication? Who does she think she is? Doesn't she know parents have much more access to info nowadays? This drug, and its wonderful ability to combat nerve pain, is all over the Internet!

I try explaining the doc's original purpose for prescribing the medication, but snooty-nurse-turned-doctor-wannabe won't listen. Ah, yes. Jenna's birth all over again: some nurses just don't give a darn about the patients they are there to help.

WHO'S PAYING WHOM FOR SERVICES ANYWAYS??? Why, oh why, are these medical people forgetting who provides their paychecks? If it wasn't for us annoying little patients with our annoying little problems, they would be flat out of a job, and who would they be snooty to then?

The nurse hung up on me because I told her she was being rude.

How RUDE! If you know me, you know that I really, really can't stand confrontations. But this girl... I wonder what she would do if she had a kid who was doing what Cohen was doing and someone reduced her concern - and her child's behavior - to "mood."

So Craig calls back and calmly states our case and complains about this nurse. He schedules an appt. for Friday. The pleasure will be all his.

I'm tired. I don't like calling doctor's offices. I don't like going to them either. It's a catch-22. I have to speak up for these kids when they're hurting. It's my job as mom and I love being a mom. I love my kids. But I hate the fragile nature of the human body. I hate disease and sickness. And I really wish the medical community was a little less overwhelmed and a LOT more understanding, or at least willing to listen more. Not that we don't have some great doctors. But they are all way too busy to really pay much attention to one patient. Even the nice ones are so overwhelmed they don't have time to really give a darn.

Now I think I'll go eat all the ice cream in our freezer.

Sorry for the emotional rant. Again.  Maybe it's time for me to go to med school.

Update to Last Post...

I am flabbergasted. Really.

How in the heck do you go to the ER, have lab work done on a child who can't walk or eat or even drink without vomiting and who has been running a temp of 102-103.6, and walk away with no medication, no antibiotics, and be told it's viral because that's what the blood indicates, and then get a call the next day from the peds office about a strep test done three days earlier that came back positive? She needs antibiotics mom, the girl at the office tells me. We're going to fax the prescription right over.  Why didn't the blood results indicate a problem? 

Jenna had developed a red rash all over her body. Scarlet Fever? She's feeling much better today, after nearly two weeks of very bad, very yucky, sickness. She may be able to go to school tomorrow.

How did they miss the strep in her throat? How did they send her home with nothing? As I mentioned in my last post, I'm beginning to suspect that we can't look at Jenna's blood and read it at face value without possibly missing things...

I'm just so grateful she's feeling better today. She's giggling and laughing and talking to us. That's such a welcome change from the alternately comatose kid and angry combatant we've been trying to help over the past several days.

But now. Now Cohen has a red rash all over his face and body. Little red bumps everywhere. They don't look like chicken pox and are much worse than Jenna's rash . He's not running much of a fever, which could be a good thing or a bad thing. I'm not sure anymore. I'm just so tired. Tired of this stupid season. Already.

Cohen has an appt at the ped's office this afternoon. The girl said to wait with him on a bench in the hallway. Rash protocol. I didn't say to her that Cohen should always wait at that bench (as long as no one else is already there, of course!) because of what he can catch from other kids with his neutropenia issues.

I called the hematologist too because last time I didn't and Cohen was sick I got a lecture about how the hem knows Cohen better, knows his needs when he's sick. So who to call now? Hem? Ped?

Anyways, let's hope Cohen gets quicker, more efficient care than Jenna. I know some of these docs are trying to do their best, but...  Did I mention I hate this stupid season already?

I know, I know. Whaaah, whaaah.

Hope you are avoiding the flying bugs so far.

That Time of Year Again

I had high hopes for this year. Cohen was feeling better, doing well, staying stable. The girls were doing well. Hannah's skin had improved.

But here we are just moving into cold and flu season and already we've been hit pretty hard.

In the past, we've questioned Jenna's blood, her bruising because she tends to bruise a lot.

She started getting sick last Wed. Running a fever, clogged with congestion. No biggie, I thought, probably just a virus. She missed school Thurs and Fri, still running a fever. Sat, Sun, much of the same. And so on...

By Tues, I was concerned. She was not happy. In the morning, she was stomping around acting whiny, being Miss Sensitive, so I took her to the doc. At the office, she was no longer running a fever. She looked great! Wouldn't you know it? No ear infections, a red throat (from all that drainage, probably) but no strep per the rapid strep test, chest sounds clear. Tummy palpable. And so on...

Well, a few weeks ago we were going to do blood work, but never got around to it (I know, bad mommy!). They had the lab slip ready at the doctor's office when we came in on Tues and I left the office and took Jenna right over to get labs drawn. CBC and Platelets. By this time, she was acting much, much better.

She seemed to do okay Tuesday night, and since I'd been pressured by the school in the past (why was she out for so long? type stuff), I sent her to school Wed so she wouldn't miss any more days. Thurs she woke up saying she was sick. I sent her to school anyways. It's hard to know with Jenna. Sometimes she says things to get attention. I figured she couldn't still be sick because she'd been doing great for two days.

I called the school later that morning to check on her just in case. They said she had not eaten her breakfast. She went right to the corner of the classroom and curled in a ball on the floor and went to sleep. She was not doing well. I went to pick her up and she was so sick I had to half support/half carry her out to the car (a workout!  My baby is not such a baby anymore). Halfway home she started to vomit like crazy. The car smelled like roses, as you can imagine. I thought I could possibly join her.

We called the doc to see if blood results were back. I just had this feeling.Yes, results were in.White blood cell count 3. Platelets 97.  Really low. 

I guess I wasn't super surprised. With Cohen's issues, I figured we might have missed something with the other two kiddos. In the past, the pediatrician has said they may all be linked. But now, we have abnormal blood in another child. Maybe it's just due to the virus, or whatever it is she's fighting. Maybe, or maybe not.

I'm a little scared. Confused. Frustrated. Worried.

I carried her into the doc's office yesterday just before the office closed. The doc took one look at Jenna sleeping on the table, a red rash all over her face, her back, her arms and said off to the ER you go.

They tried to get an IV in three times. Jenna screamed and head-butted me and slapped at the nurses and gnawed on her hand so hard her jaw kept popping. We couldn't get the IV in, but they got enough blood for a CBC.

The doc came in excited.  Her blood was better this time.  HOW? And why the heck is the doc excited?  She could barely walk, could hardly stay awake, was so sick she refused to eat and barely drank anything all day, when on Tues. (the first blood draw) she was walking around, being silly, laughing. I can't help thinking there's something wrong with this... Maybe last night she should have been more abnormal than she was. Maybe she started off too low. Maybe, maybe, maybe... I don't know. ER doc told us the blood indicates a viral infection - no medication needed. Let it run its course.

So anyways, the good news is Jenna now has a referral to the hematologist, because even though her blood was better last night, it was still not normal. Her platelets are still low. Which, again, could be due to the virus. Maybe, maybe not. I'd feel much better if she was followed and her blood monitored. Maybe it will give us peace of mind if it is just due to viruses, or whatever...

Jenna and Cohen both go to the hematologist on Oct. 7th.

That is a big day for another reason. That is the day Cohen will start getting intravenous immunoglobulins, otherwise known as IVIG. This is an all-day appointment on an IV drip. If, after three sessions, he improves (including his blistered skin, which isn't getting any better), he will get a portal put into his chest to administer the plasma through there. I am actually so excited--this could really, really help him, but it is a year and a half of hours-long treatment every three to four weeks from what I understand. But if it improves the quality of his life in the long run, I am all for it!

Cohen is also getting a full-time nurse. I couldn't be more grateful for the help. This life is getting crazier by the day...

Cohen just got sick all over Craig this morning, who has been gone since Tuesday and returned home in the middle of the madness... I guess Cohen finally caught the virus, too, although I thought he already had it because he's been waking up screaming every night for the past two weeks. And Hannah got sick last Sun., but is finally feeling better today. She couldn't even get out of bed yesterday, ate two pieces of toast all day and vomited it right back up. *sigh*

AND on top of all of this, my cousin, his wife, her mom, their roomate, and their two kids came to stay with us as Hurricane Ike pelted their neighborhood last Sat. They came here last Thurs. night and just left yesterday, after a full week, because power was finally back up in their neighborhood. We were all watching, fascinated and appalled, as the hurricane swept through Galveston and Houston.

My cousin lives at the far end of Galveston Bay, a little more inland. His house is okay, though. He is so relieved.  Bad luck follows this poor guy like the plague.

When Hurricane Rita hit Beaumont, my cousin's apartment was demolished. He recently had to stay in a rental home for a few weeks (courtesy of homeowner's insurance) because his house caught on fire. So when the eye of Hurricane Ike headed right up into the bay, we weren't really surprised.

We were all joking about it, which made it seem not so bad, even as we hoped people in the area would be okay (some of our family stayed there) and that my cousin's house would withstand the weather. But my cousin knows by now that stuff is just stuff.  At least his family was safe.

We managed to get in some time to visit, went out to dinner, caught a movie. They went sight-seeing a couple of days. I love having family around so I didn't really mind the chaos. And surprisingly, despite all the craziness, I miss them now that they're gone.

The girls makin a mess right before we make them clean it up!

The nurse and Auntie bundling Cohen up like a burrito. Or a fortune cookie.

The odd man out. He looks thrilled.

More kid craziness.

Cohen sleeping through it.

As you can probably imagine, mealtime was very interesting in a house with twelve people. The guys were nice enough to cook up a yummy breakfast one morning...

Flowered pot holder and all. 

And April's mom cooked up some Filipino food for everyone.

With some help from April.

It tasted every bit as good as it looks. 

And special treats for all...

Yeah, we couldn't resist. This platter was gone in two days. Seriously.

And below, tired, but happy...

Her mama must have just said something really, really funny ;)

And some pics I wanted to post a long time ago: 

First day of school!

Yeah, I know it looks like night-time. It's not. It's six a.m. and we're waiting for the bus.

My beautiful girls!

Someone's hair's not done yet cuz she, at least, gets to go to school much later.

Walking sister to the bus.

This post ended up being much longer than I planned. Till later!

Here's What We Know So Far...

Results are all in. They ruled out a bunch and told us not much at all. Except what he doesn't have. Of course.

--From the hematologist's mouth: our guy does not seem to have problems producing neutrophils, but he does have problems getting them from the marrow into his blood. I've been told by other parents who have children struggling with neutropenia that this doesn't mean much yet; their kiddos have had perfectly good bone marrow biopsies and still have a bone marrow failure syndrome (docs catch the issue in a later bone marrow biopsy - and yes, there will be more in C's future because neutropenia can potentially develop into Leukemia, which is essentially what the doc is telling us at this point C does not have). The only other thing: slightly low hemoglobin. Low enough to be flagged consistently low, but not low enough to be concerned.

--All of the chromosome tests have come back normal.

--His fecal fat test came back normal, but our follow up appt. is on Sept 23, so we haven't yet spoken to the GI doc about that one. I have so many questions to ask...for example, if C is on Neocate-only diet, where he doesn't have to break any proteins down, would that affect a fecal fat test? Also, if there is no evidence of fat buildup in the stool, will there be any more tests? Or should we just try to feed him certain foods? And if so, what? 

--His skin biopsy indicates an auto-immune response. From what I understand, this basically means he does not present with typical "eczema" which is usually attributed to allergies or sensitive skin. Instead, his body attacks his skin when he's sick or struggling. (Hmmm... wonder if H's skin problem is the same?)

I think this is what we've got so far. So not much, but then again, much more than we started with... I guess ruling things out is good too.

Oh, and it's official: C's Neurologist diagnosed him with a neuro-disorder, although he is not ready to ascribe the "A" diagnosis. Instead, he diagnosed C with PDD (Pervasive Development Disorder), the umbrella that Autism falls under, which some people argue is not much of a diagnosis. I had a hard time with it at first, but this diagnosis is important because it may get him more therapy services and help. It doesn't change who he is, it doesn't cause us to give up on him or reduce him to a label - on the contrary, it offers hope, assistance with getting him on the right track, more resources.

Because at the end of the day, C is a beautiful boy. He loves his family and he is happy.

Regardless of where he may measure up in the pediatric world-at-large, he's living his life with a cheerful spirit and he's inspiring us every day. I know there may be obstacles ahead, life won't always be easy (it never is, right?), and we may deal with things we don't know about yet. But we're relieved and thankful that he's doing better, that he's staying healthy, that he's smiling!

Even those darn shots don't seem so bad anymore.

Have a beautiful day.

Wei-erd...

Okay, so very strange things have happened lately.

First, there was the lightning. What more can I say about getting struck by lightning?

Then, I was sitting at a stoplight behind some guy in a big ol' truck. We were in the left hand turn lane. When the light turned green, he sat there for a few moments too long. As I waited impatiently for him to step on the gas already, I noticed a bumper sticker with a picture of a crossed out cell phone and a message: put it down and drive! Which wouldn't have been so funny if it weren't for the big black arrow pointing to what was apparently the result of a not-so-gentle love tap.

You probably know where this is going. He turned left- finally! - and I noticed his phone up to his ear.

I thought about making some gesture, like holding a fake phone up to my own ear. Mind you, I have occasionally, only occasionally, driven with a phone up to my own ear, but this is exactly why I would never put a bumper sticker like that on my car!

Then, I was driving down a major interstate through town when my cell phone rang and yes!!! I answered it. (Hey, we aren't in California here...although I have a suspicion we may have to give up the chit-chat on the road before too much longer... then again, we can still ride in the back of trucks and stuff here, so who knows? The horrors!)

So anyways, I answer the phone and my friend's voice asks me where I'm at. I'm not sure what she's getting at, but I tell her where I'm at and she tells me to look to my right. And lo and behold, there she is, flapping her crazy hands out the window of a friend's car. She's a nurse and she was in between patient's homes. Running into her on the freeway is crazy considering we live in a huge city.

But then, something else happened. I was driving in the center of town, heading into strange territory trying to find music supplies for H's piano lesson, and I get in the left hand turn lane. A car is heading towards me going pretty fast (it was a few minutes to nine - maybe someone was almost late to work??) so I step on it and turn. The car turns onto the road right behind me. It looks familiar...

...and then it pulls up next to me and I glance to my left thinking no, it just couldn't be! but yes, it could. There was my friend again. She's on her way to work in an area of town I'm never in. 

So we roll down our windows and we yell at each other, laughing, telling each other, "stop following me!!!"

Then, I'm at H's dance class talking to a friend who tells me her good friend lives in the development right next to ours. So I tell her we looked at houses in that development and I absolutely loved the neighborhood. I describe a backyard we saw as we were looking at one home in particular: the fence of this house we looked at backed up to an incredible yard with a professional, lighted basketball court, a gated swimming pool, and a full playground. I kid you not. This yard was incredible. One of a kind. I told her we couldn't live there unless they put a gate in between our yards :) and plus, the oven was kinda strange on it's own wall on the wrong side of the kitchen.

She looked at me for a few seconds without talking, and I'm thinking no way. It couldn't be. Right? Right???

She tells me she thinks I'm talking about her friend's house.

Turns out her friend bought a house a few months ago, shares a fence line with the incredible back yard and has a funky oven on a wall all by itself.

Out of some two hundred houses in that development, one hundred and fifty at least, I happened to describe her friend's. And yes, it's confirmed. Her friend shows up for the next class and we figure out that it is her house (I left out the part about the funky oven though...). She tells me they got a heck of a deal on it. Good thing, with the oven and all.


*

On another note, we made it to church today and J and H love school. C loves his nurse. And mommy's very, very happy because tomorrow is another MONDAY! YAY!

Hope you are happy and well!