Fired!!

I had to make one of the most heartbreaking decisions yesterday.  I fired our pediatrician.  I still get teary thinking of it.  He is an amazing doctor.  It was the office staff that caused me to fire him.  I believe in a 3 strikes you’re out rule.  I hit the 3rd strike yesterday.

The first big negative thing that happened was when I finally get health insurance for Rachel.  For some reason the insurance company is saying that there is insurance but the office wouldn’t accept it.  It’s been a 3 year struggle over $300 to pull an eraser out of her ear!!  $300 for that!  Insane!

The second thing is that this doctor is in very high demand.  He is absolutely amazing.  So he is slammed.  I tried to schedule their well child checks.  We do them together every summer.  Well, they couldn’t get them in until the middle of September.  September!!  3 months.  That does not work when Matthew needs a shot before he starts school and school starts in the middle of August!

And the 3rd strike…the most heartbreaking…they wouldn’t allow Rachel and Matty to go into the room together because Matty is over 13.  I explained to her that Matt was mentally handicapped.  We always put them in together.  He watches what the doctor does with Rachel so he knows that it is no big deal.  Then he has his turn and it goes very smoothly.  The receptionist would not budge.  She said it was a policy that was passed last year.  Children over 13 have to go in alone. 

I made the September appointments and then I sat and stewed.  The more I thought about it the more pissed off I got.  I conferred with Kevin.  He totally sided with me on it.  I knew then that I wasn’t being overemotional.  I know I can do that at times.  I called our family physician to see about transferring them over.  I was able to get them in on July 7.  And this receptionist actually ASKED ME if I wanted them to go in together!  Score!

Therefore, I’m making the transition to the family doctor earlier than I anticipated.  I do plan on writing a letter to our pediatrician saying good-bye and explaining why we switched over early.  It still makes me sad.  I have a huge history with this man.  He was the one who found the fragile x in our family.  He has been there through it all with the kids.  But it obviously is time for us to move on to different pastures. 

(And our family doctor and the pediatrican grew up together so I know they will happily swap information to help with my kiddos )

Matthews Doc Appt

The appointment for Matt went okay yesterday.  His pediatrician wanted to see us so we could discuss the seizure and make sure we were all on the same page on what we felt he needed.  So this is what we decided:

• EEG ~ out = Matt would have to be awake and there would be no way that he would allow them put that cap on his head.
• MRI ~ out = it would be an all day ordeal.  He would have to not eat after midnight.  Then he would have to have an IV and be sedated.  The test would take 1+ hours.  Then he would have to wake up and get moving.  Then we would have to get him home and watch him to make sure he had no adverse effects to the anesthesia.
• See a neurologist ~ out = We would have to wait months to get an appointment with the sole specialist in our state.  It would also be an all day event.  We would have to drive 3 hours to see him/her.  And they would want to run an EEG and an MRI
• Drugs ~ out = his pattern is about 1 every five years so it’s doesn’t constitute using meds on him.

His pediatrician knows that we refuse to use drugs unless it is a necessity.  We like to use other means of dealing with challenges.  If we have to resort to meds though we will.  So we discussed petit mals, aka absence seizures, and their effects on the body.  We created a plan so that we both knew when we would begin testing or medications if need be.  I feel really good about it all.

Trying to Find a Diagnosis

For my past FX Memories please click this sentence.

Shortly after Matthew starting early intervention we saw his new pediatrician.  I liked this man immediately and I’ve never been a fan of male doctors.  Don’t ask me why…just a weird “Beth” thing.  Dr. H listened to everything I had to say about Matt’s delays.  He told me, with a sincerity and honesty that I’ve never seen a doctor have before, that he didn’t know what was wrong with my baby but he wouldn’t quit until he found me an answer.  I cried. 

After I left his office he spent his entire lunch hour conferring with doctors in the big city about Matt’s symptoms.  He came up with a game plan.  He called me at home that same afternoon and told me that we would start out with 4 tests: hearing test, vision exam, an MRI, and a chromosome test.  He even had me appointments for all 4 of the tests.  This man was amazing!!!

The first test we did was the hearing test.  We did the kind where he had electrodes attached to his head.  We had to put him to sleep first because he would have ripped them off in a heartbeat.  I had to keep him up all night the night before.  His father stayed over.  I should have known he was already gone.  I tried countless times to get him to help finish our wedding plans but he kept changing the subject.  I was such a naive young woman…but aren’t we all.

I was a little protective of my little man and didn’t like the idea of him being in the hearing testing room alone for hours.  The technician noticed that I was nervous about it and let me sit in the chair and hold him during the exam.  I remember leaving there with a very numb arm   .

This test would be the only normal exam he would have.

In order to not have to put Matt under more than once in a short period of time we left the hearing exam and went straight down the hall to get an MRI.  This test was a piece of cake since he was out like a light. 

Next up was the chromosome test.  We did that about a week after the hearing and MRI.  I wish he could have been put to sleep for this exam.  It was a nightmare drawing blood from him.  It took 4 of us to hold down this little 8 1/2 month old baby to draw blood from his tiny veins.  It took us a good hour.  I still have nightmares about that day. 

Finally, was the vision exam.  This was another one that was traumatic.  It was so traumatic that I have never had him see an eye doctor since.  The eye doc put Matty’s head in my lap.  Then he wrapped Matt’s legs around his waist.  Then he shone a light in his eyes and poked and prodded and put eye drops in.  Matt cried and screamed and puked.  I cried and wanted to scream and puke.  I can still feel his anguish and it was 11 years ago. 

I was so happy to be done with the tests that I didn’t care about the results at this point.  I didn’t expect the doctor to find anything.  I hoped that they would find something that could be fixed or would go away.  But I had this feeling that after a ton of tests they would never know what was wrong with him.  People would think I was making a big deal out of nothing since the doctors couldn’t find anything.  Or he would be this anomaly that no one could figure out what was wrong with him but it would be obvious he had a serious defect.  

I was also scared that it was all my fault.  I was 19 with no real good examples of parents.  I was completely winging it.  My advice came from books and magazines.  What if I did hold him too much?  Was there some magical thing that I wasn’t doing that I should have known to do?  Maybe I shouldn’t have tried to raise him on my own as a teen mom.  But I would look at him and know that I was a good mom or he wouldn’t be as happy and health as he was.  And I would look into his eyes and I could see that something wasn’t connecting properly.

Wrap-up of the Day

I was a good girl today.  I didn’t overdue it.  Promise.  My supervisor even told me to tell my hubby that she was sending me off looking pretty good.  She cracks me up.  She is like my surrogate mother. 

Matty did have a sinus infection.  He was not happy about the doctor.  Surprise, surprise.  He is really improving with it though.  He did everything that the nurse and doctor until the very end.  The doctor wanted to look in his throat and he didn’t want to say “Aaaah.”  So Doc H had to grab the tongue depressor. 

As the doctor was writing out the prescription, I mentioned that the school was wanting an updated diagnosis on Matty.  We always chuckle at that because fragile X isn’t going anywhere.  He decided just to write a little statement on a prescription paper and see if that will make the powers that be happy.  I got home and read what he wrote and realized my doctor isn’t up on the FXS lingo.  He wrote that Matty has “a Fragile X Disorder with autistic features.”  Ummm…not a disorder Doc but okay.

I bought Matthew a chicken strips kids meal from Sonic as an incentive to be nice to the doctor.  When we got to the van I tried to give it to him.  He actually refused it!!  He tossed it back at me and told me, “NO!”  I asked if he was thirsty.  He told me, “huh, uh.”  About halfway home he says, “I’m starving.  Sonic is good.”  I had to chuckle.  I told him he had Sonic already but he didn’t want it.  A couple of minutes later I looked back and he was chewing on his chicken strip.  I asked him if he wanted his root beer and he still denied it.  He didn’t drink it until we got home.  He was so mad at me.  I figured this probably wasn’t the time to tell him that he has a dentist appointment Monday afternoon.

Austin’s doctors appointment went okay too.  They are going to work on getting him in for an EEG next week.  He still seems to be okay with whatever happens.  

I was telling my supervisor today that Lauren is the only “okay” one.  So she will drop a bomb like she is knocked up or something.  (I know Lauren is a virgin so it was totally a joke.  Right Lauren!)  Well, nothing that severe happened but she thinks she broke her thumb on the bus today.  She had a slow girl get in her bubble and try to touch her feet.  Those two things are huge no-no’s with Lauren.  Lauren tried to maneuver away from girl by putting her hand out while she moved away and jammed her hand on the bus seat.  We have her keeping an eye on it but we may need to take her to urgent care and get it X-rayed tomorrow. 

Knock on wood that Rachel is okay.  She hasn’t had health issues though.  Her issues this week have been behavioral.  I had her walk home from school on Monday so she could get ready for soccer.  I had to go pick up Austin at school.  I left Rachel a note on the kitchen table explaining what I was doing.  It also said for her to get her soccer gear on, have a light snack and I should be home by then.  I get home and she is nowhere in the house.  I’m about to enter total freak out mode when she comes in the front door.  It is 10 minutes to soccer practice and she still has her school clothes on.  She got home, read the note, threw her stuff on her bed, and went up the cul-de-sac to her friends’ house.  She is no longer allowed to walk to or from school for the rest of the year and she was grounded for this week.  Her dad just found out so I have no clue what punishment she will have at his house.  Then as if that wasn’t enough, I busted her taking peeks at my tv last night.  When I called her on it she stamped her foot at me and walked off.  She got sent to bed an hour early for being disrespectful and Kevin gave her a little talking to about her behavior.

I am just so ready for the weekend…or a trip to somewhere super warm and sunny.