Hematology/ Oncology ( que dramatic music please)

I am just finishing up my degree at ASU and have the GPA ( I have NO idea how) to be able to at least apply to a few( like 2) local Physician Assistant programs in the Great State of Arizona. If I can't get into either, I will have to keep applying or not go because I can't leave the great state of Arizona either. (Secure borders and all :) Just kidding! Long term care) Anyway, having a child with with extra needs means we meet a lot of people who's children are sick. Some terminal, some with genetic craziness and some with just really bizarre happenings.

As I become friends with these kids moms, I get curious and we talk about our kids conditions, and we compare notes of what doctor is awesome, what doctor could brush up on his people skills and what doctor could just brush his teeth. ( Yes doctors, there is an unground group of SN moms who will either make or break you. It is not limited to specialists and it is a NATIONWIDE thing, so be afraid!)

With these conditions also comes Dr. Google. Yes, you know him,  the ones that say that cough is really the start of Ebola. That is how it works.  Everyone does it.

By no fault of the "real" doctors we see, sometimes googling just helps a soul! But the other day, not even google could help.

Grayson, bless his little heart and GI system, eats rocks. Not just" oh look, your kiddo has a rock and some sand in his mouth" eat rocks. We are talking chewing off bits of the rock, chewing it into powder and swallowing the rock particles. This includes things like hiding in the back of the house to chew on the ledge of the window where stucco can come off, licking the rocks on the pillars at our house and then of course the whole, just sneak the big old fat boulder into the house because we won't notice you in the corner EATING IT, rock problem.

We took him in a while ago and was referred to a PICA clinic.What a bust! Ignored the problem, like awesome parents and dealt with smaller things like seizures and botox and such. ( Sarcasm inserted) But having no neurotypical ( this is what us "special" parents call kids with no magical neurological "gift") sibling or anything to go off what is right or wrong, when we found Grayson screaming and screaming and screaming all the time we thought that there might be something wrong.

Turns out, he screams cause he is three. Hmm. Turns out however, they were less than ok about the continued rock eating and the extreme pale skin my son is sporting. So decided to draw blood. Just a poke. And it evoked no tears from either of us. Came back that he was a " little" on the anemic side.

Fast forward to going in again because he is still screaming and screaming and screaming ( Turns out they do that more when they are tired. And they also sit on their brother's head while he is under water because they can and are three) But it is still OK that he is screaming. They notice no follow up on the anemia was done ( read: I didn't realize they want me to come back and 2) we have been moving and having botox and having LOTS of seizures so I figured a little dirt and rocks... whatever)

Again a finger poke..... Anemic.

Go get more blood work.

3 days after finger poke we go get the blood work done. His hematocrit is LOW. Like really low. We also asked for a CBC and along with that comes the WBC  or white blood count which helps determine if the body is fighting something off.

I get a call and a voicemail saying to call the office. The Nurse practitioner is gone for the day but the MA ( medical assistant) was given the information to share that I needed.  The conversation went like this:

"NP said that Grayson's hematocrit has dropped even further and he needs to get in for testing as fast as possible. We have sent over a referral form to the PCH hematology and oncology. He needs to get in as soon as possible and they are looking over his records right now. What family history do you have with things like, childhood cancers or renal failure?"

Um.....

I don't even need google to figure out what the heck is going on. I ask her nicely for the CBC and white blood cell count. See, if I know that, then I won't be blind sided by anything that is life threatening before walking into oncology.  She insists that she can't give it to me, that I just need to call the PCH number she gave me and get on the schedule.

I hang up. Cry. Sob. Scramble to call anyone I know that has a MD, DO, PA or NP at the end of their name. I just need to know what the other levels are at!! I make a few sobbing phone calls. No answers. I am throwing up at this point ( see I have a anxiety problem... more about that later)  more sobbing and another call back to leave a message for the PA to call.

While doing that I was on with hematology and they were working to get him into the right place and would " let me know" where to go and when.

PA from our peds office called. He was trying to get to the phone to call when he saw the information that the girl DID give me and said she is going to be in panic mode. And he was right. Cause he is cool like that.

I was horrified that Grayson might really be sick and that this whole time we let him eat rocks and not poop for weeks and yell at him for screaming ALLLLL the time and now he had CANCER!! What!! What kind of a person was I!! ( those were the thoughts I had.)

Rest assured, the long story you just read was all just drama. Grayson is FINE. He has a LARGE hematocrit problem and he either doesn't absorb iron, has GI issues contributing to his lack of absorbing nutrients, is Mal nourished ( you know.. no big deal) or has a Mal absorption problem. He needs to see hematology and oncology and will. But he is not "STAT" like the nurse indicated. It is more like let the real kiddo's get in.  He probably could use a transfusion. It is pretty low, but first find the root of the problem and move up from there.

A huge thanks to the people who saw the ugly face cry when my worse fears were cancer. Another huge thanks to TJ Barnett who got 2 voice mails while ugly face cry was happening, Aunt Nicky who was trying to figure out why ugly face crier was still crying and call to help more and mostly a thanks to the PA who thinks I am smart and knew that oncology+low hematocrit+ I won't give you any more info + STAT= this mom is crying and freaking out and called to figure out what in the world was REALLY going on with me.

awwww.... Stupid Iron

Sensory Overload most call a Haircut

Holy mother of overloads! Ty just had a majorly sensory overload. Holy smokes. Tyler was in desperate need of a hair cut. Like he REALLY needed to get rid of the wings he was sporting. He is not the kid that lets you just comb it and his hair isn't really the hair that will stay down even with gel and Mousse.

See what I mean... WINGS... WINGS. The kid could fly away.

So, out of the need to get out of the house today we braved cookie cutters hair salon to get a hair cut.... I told him we were going there. I told him that it wouldn't hurt. I told him he needed to be brave. He ran off and played...

THEN came his name being called. I think we scared the poor mom waiting to get her kids hair done. As I calmly HELD MY CHILD DOWN and tied him into the chair and then HELD him down more she kept looking and asking if we needed a sucker or something.

I was surprisingly calm. He was not surprisingly horrified. The dude doing the cutting though did a great job.

We went ultra short. I am usually not so OK with ultra short but I am more so no OK with the drama that comes with it. The other not so OK is the scars. I don't like them showing. He is brave without battle wounds.

A sucker and balloon curbed the tears after.

He looks handsome!

( sorry for not the WHOLE head showing. Once he knows his picture is being taken he jumps around like a wild monkey. But you get the gist.. NO MORE WINGS!

Sleep Study- in pictures

The long awaited sleep study was last night. I am exhausted tonight so that explains how well it went. Right!~
We left extremely early for the sleep study because it was snowing. No it was a fast moving blowing and freezing semi-blizzard. Dallas and I decided that I would take Tyler alone because 1) Dallas has his own set of sleeping issues. 2) What was the point? There is only one other bed and if he stayed home I could sleep in the morning ( after) and 3) why pay for 2 cars to drive up there. Totally pointless.

We got there pretty early and the lights were off and the door was locked. I was horrified that driving up there, keeping Ty up past his bed time and then not having anyone show up was going to make me SUPER mad. We need to have the right meds before our procedure in December.

At 8:30 the tech showed up and we were the only ones there for the night.

The rooms were very nice but the beds ( though they looked nice) had mattresses far below hotel standards. I mean, if the room looks nice at LEAST make it a pillow top. But Ty was pretty chill at the beginning. He was watching a movie and laughing until the tech came in.

I have no photos of the ordeal because it required pinning, sitting and basically holding my kid down in order to get him to allow the tech to get him to put all the crap on that they need. I seriously can't fathom how the heck they expect anyone, kid and adult to sleep with this crap on their bodies. We were lucky to get his meds in before he was crying in hopes that he would crash as soon as the stuff was over. It took about an hour before he finally crashed.
(Sorry about the blur quality but it was dark) That is the amount of wires that were stuck somewhere to his body. Not kidding. He had 3 on each leg/calf. 4 on his back 9 on his face 4 on his head, 5 on his chest and 2 under his nose ( not pictured) They had a nasal cannula and a nose pressure thing ( the 2 on his nose) that they had to wait for him to be deep asleep because they knew he wouldn't tolerate them to put it on before hand. And on his foot he had a foot probe for oxygen and on his chest 2 straps. Yep.. and he was suppose to sleep. Oh! and a microphone and a monitor for his heart. Yeah not kidding

So of course the results aren't in yet. He feel asleep around 9:45 pm and slept soundly till around 11 or 11:30 where he was up around 4-5 times ( not sure how many, I lost count around 3) and at 4-4:30 he got restless enough he was sitting up. And at 5:00 he signed all done. I moved into mom cope mode and moved him into my bed where we put on a movie and "tried" to sleep and the tech came in and said it was pointless to keep him there if he wasn't sleeping and we then combined efforts to pull off the 30 MILLION probes on his body. Then off we went. He cried taking them off almost as much as putting them on!

We went to see if Smith's was open in hopes to score a donut but they aren't open till 7 and it was only 6 so we went to McDonald's and got us a yummy Breakfast ( I know, so healthy!) but it was such an early morning. Ty and I ate ate breakfast in quiet. Then watched a few movies before we went and bugged Dad! At around 7:30 I couldn't keep my eyes open any more. Dallas saved me and took over the parenting duties and I slept ( with weirder dreams than I care to admit) and I resumed the parenting duties a little later.

Through out the day Ty didn't nap and tonight he was DONE and so were his parents. I think emotionally I was done as well. As I was talking to Dallas last night I thought " This really sucks." I honestly wish a million times over that we didn't have special needs. That our live was mundane and boring where the most dramatic thing that happened was so ordinary that people like "us" look in envy. Instead, I am thankful what I have learned but really wish for Tyler's sake and my sanity most days and Dallas sanity, that just once it would be "normal."

We are so thankful for all that Tyler has taught us. We can't express how much he means to us. Special sucks! But we have a special kid regardless of his needs. He rocks!

And for the record, last night was pretty typical of how our lives have been at night for about 4 years. I think in all honesty he has only slept through the night maybe a handful of times but I always wake up alarmed around 3 am because he hasn't showed up in our room or hasn't cried all night and I panic. Also he does get sedation meds at night. And they are heavy duty ones and NO they don't work and no we realize that it isn't normal.

Any questions after the long long post!! GOOD.. just kidding. Let me know!

Socialized Medicine, Heath care reform and the works.

*For the record, I am NOT totally sold on Obamacare. Nor am I sold on socialized medicine. I do think that there is a desperate need for some kind of health care reform.*
I listen to a lot of Talk radio. My mom is smiling and laughing at me right now. But it is true. I don't love Glenn Beck but he has a lot of ideas. Not always good ones and he is a little over the top. But there are so many others down here that I listen to. Anyway, all the rage is the "Obamacare" and the down side of it. I like the local ones, but find myself disagreeing with some but not all of the ideas of the plan or several plans.

That said, I have a lot of research to do and lots of pros and cons but here are my thoughts..

Socialized medicine is put down A LOT. Meaning that while living in an apartment with 3 Canadians at one point in my college career, they got amazing health care in Canada. They had everything the needed while living there and didn't have anything bad to say about it. While I don't always agree with socialized medicine and hear all the time that preemies are being sent to the states to get care, I don't agree with that. American NICU'S and Canadian care is not the worst thing. They still get great care there. America isn't the highest in Health care and saving babies

I watched the documentary on socialized medicine from Michael Moore and frankly we didn't do those people justice either. They were able to walk across the border or row a boat for that matter and get the care they needed.

I hear all the time that people are waiting YEARS for a CT scan. Yet if Ty went in in shunt malfunction ( a life and death situation) I am sure that care will be given. I don't think that he will wait months of years to get something that is life threatening. If Dallas went into his primary care doc and had to have a MRI for a non life threatening situation I am sure he would be waiting months.

THAT said, to get an appointment with a developmental pediatrician, with PRIVATE insurance in the great state of ARIZONA and last I checked the United States of America, it takes 9-12 months. That is right. He can't get in to see one for almost a year. There is no difference. It wouldn't make a darn difference if we were in socialized medicine or not. No more or no less would be seeing this doctor with socialized medicine. For Ty to get an appointment with the lady that does his botox it took 9 months to get. So again, how is it that any different than socialized medicine?

We are now looking at private insurance. Knowing we will have to pay out over 700 dollars a month we still embarked on the journey. Sadly Cerebral Palsy is a condition that is one of the most expensive disabilities. Those who suffer from it need on going therapy of some sort to keep their body functioning. Therefore we are having a hard time finding someone to insure us privately. We have had no lapse in coverage since the day he was born, it is not considered preexisting because of a bill of HIPPA passed by President Bush ( the first one I think?) so the idea that we can't cover our family because we will never pay in as much as they pay out is stupid.

We are part of a "socialized medicine" already. It is called Medicaid, medicare or whatever you state wants to call poor people insurance or old people insurance. Its a broken system. Ty is on State insurance in Arizona but in order to be on medicaid in a different state ( the state we are moving to) a family of 5 must make UNDER 700 dollars a month. Yes that is right 700 a month for a FAMILY OF 5. We are a family of 3. Can you imagine making less than 700 a month? In order to keep him covered we have to do something.

Is Obamacare the answer? Maybe, maybe not. But is leaving someone uninsurable the answer either. He deserves care to. We are not even asking it be free we are asking that it is made obtainable. We need something we can afford. We can't afford to pay 700 for me and Dallas to be insured and a spend down program of 400 for Tyler. That isn't "fair."

We are paying taxes, we are paying into a broken system as well. What do we do?

Some say that in Obamacare Tyler wouldn't have been "saved"? While that may or may not be the case he is here now and he is a contributing member of society in some way. Without some kind of reform in the system we have, you are telling me that he is not a productive or contributing member of society.

We are not asking for a handout. We are not asking it to be free. We are ASKING to pay for it by applying for health care coverage. The current system is denying us. They are saying no. If there was something we could do instead we would do it.

SIDE NOTE: There are a lot of people out there that get medicaid while having babies and are saying no to socialized medicine. Did it ever DAWN on any of you that medicaid IS socialized or government ran insurance? Those of you with preemies who are totally against Medicaid, I recall MANY of you getting SSI and medicaid while they were young and even up through age 2, again, GOVERNMENT ran insurance. You can't say you don't want it when you used it. Maybe saying reform is a better idea?

Also the clause of them coming in and telling you how to parent: they do that if you are in the system any way. If you are getting early intervention services there is someone coming into your home every six months telling you if your kid is delayed, what services they will be sending to you, what things you should be doing. I don' think in real life they would be sending out someone every day to your house just to tell you how to parent, but I do think if you are using the government health care and you just racked up a million dollar bill they might be stopping by. Oh well. I would rather them do that the me try and pay out the money that I can't afford.

That is my rant...

Very unsettled

A few posts ago I posted about being settled. While I am settled with Tyler I am not settled emotionally any more. I am not sure how long I have been unsettled. I am not sure if it s a new thing or if it comes and goes but one thing for sure is that I needed help and I got it and I am excited to keep it going.

After discovering some mean horrible things I decided ( after much crying and though) that I needed me time. That meeaning no more enmeshed family. No more over involved family member, grandparents and sisters. No more phone calls, emails or responses to anything.

I am still on the depo lupron and am on my last month and have been way more emotional than I have ever had to deal with. I started some new medication and hopefully that will help me out a little more.

I started back seeing a therapist. She specializes in PTSD and I really like her. She has helped alot even after one visit.

I started weight watchers and lost 3 pound this week. And while out for the meeting made an impulse move and got a pedicure. I am looking forward to a little me time on friday and plan to go tanning.

I have used my respite worker a lot and will use her every day this week. I am getting ready for visitors next week and she is going to entertain Tyler while I scrub, dejunk and make my house more stress free.

I am looking forward to fixing me. To making me more settled and to do what I need to do. I am not that person that my family has made me out to be. Those who have claimed to be friends with me and have hurt me don't be surprised if I don't let you in. Don't be surprised if you find yourself talking to a different person.

I have been a little to hurt this time. ...


As far as Ty is concerned we have been super busy and it won't let up.

Monday we went to foundation, Tuesday I had my meetings and toe painting, Today was PT and we cleaned the bathroom and walk in closet. They are dejunked and beutiful. Oh and we had an eye appointment for Ty. Thursday is OT, and eye therapy. He is going to be working on feeding himself and scooping his food. He can get it in but not scoop it up. Resptie will be here and I am hoping to be done with my room and most of Ty's . I hope that D will be able to do the office this weekend. Friday we drive into Pheonix and work on his braces again.

Don't worry.. I still have to work at night and I am dealing with the mean and horrible people there. Things are getting better though.

I will be ok!! I will be ok!!