Tuesday, April 16, 2013

Ramblings of a mad woman

So I just realized that October was the last time I updated the blog, oops sorry guys.

Things have been pretty busy since the move: Aiden switched schools; Scott started school; we switched ABA companies; the boys' yearly and 6 month appointments with all their specialists; Aiden having 12 ear infections now, four of which have perforated his ears; allergy testing, hearing testing, and ENT appointments for Aiden; new asthma diagnosis for Scott along with a nebulizer regimen daily; sleep study, opthalmology, and 24 hour EEG for Aiden to determine his seizures and whether or not he has a neuromuscular disorder.

That right there is a lot of changes and stuff going on, and it's enough to make my head swim just thinking about it all.  We are almost done with it all now, hopefully, unless doctor's order new tests after all of these.

The results:

Aiden switched schools and his new teacher is great and is great with him.  We are currently talking to her about him switching to Kindergarten next year, we are positive he is academically ready for is.  He is currently reading at a 1st grade level, not on demand, but by himself.  He is also doing addition and subtraction.  Aiden's newest thing is talking to us all about kinetic energy; where in the world did he learn about that, I do not know but he sure has an amazing grasp of it and the concept of potential energy.  He is one smart cookie and I, along with his therapists, am afraid that if he stays in PreK next year for the third year, as his birthday is late, then he will start to regress out of boredom.  Plus if he does go to kindergarten next year, he will be following about half of his class there and so he will have some friends already there to help with the social piece of it.

Scott is doing amazing in school.  He did switch teachers in February, but he new teacher is just as great as his previous one.  Scott does things there that I still cannot get him to do here.  But the main thing is he has fun, everyday when he sees the bus he beats me to the door and is already up the steps and on the bus before I can get Aiden out the door.  He is such a happy little guy and I am glad that he enjoys school.

ABA, in December we took a little bit of a hiatus from our previous ABA company.  Nothing was wrong with that company, they are great people, we just did not feel it was working for the boys anymore, as they kind of started to level things off and were no longer progressing at the time.  So we took about a month off from therapy and searched other companies.   We found the company we currently are getting services through and they are amazing.  They do a hybrid clinic, part in home therapy, part in clinic therapy to help carry over skills and add in some extra social pieces.  They both have two therapist and all of them are perfect for the boys.  They no longer try to shut the door on their therapists when they come over and they get excited when we go to the clinic.  It is great and the boys picked up where they left off and are mastering programs daily.

Aiden has been having a hard couple of months with his ears now.  His tubes fell out about 6 or 7 months ago and since then his ear infections have started coming back and coming more and more frequently.  By February he had had 8 ear infections, and then he started to have them where they would perforate his ear drum.  He has had two double ear infections that perforated both ear drums, and then just two weeks ago he had one that perfed his left ear drum and now he has one that perfed his right ear drum.  We have already seen his ENT in March about them all, he ordered the allergy testing, hearing testing, and sleep study to determine if it is sinus pressure, allergies, or something else that is causing them that we could control.  The allergy testing told us that Aiden is allergic to all types of grass and to most chemically made preservatives.  But this does not account for the mass of ear infections, however, it does answer some of his GI and behavior issues.  We have started all of us on a natural/organic preservative free diet and so far it seems to be helping with his GI problems, but we have not even been on it a full week until tomorrow.  Aiden's hearing test showed that he has some hearing loss in both his ears and that he has a constant clear fluid behind his left ear drum that does not allow it to move and his right ear drum is sunken in and is not functioning correctly.  The audiologist believes that putting ear tubes back in might help to resolve his hearing loss, but that he will likely need to continue to have ear tubes in place his whole life.  This I can deal with.  But then there's the thought of if the tubes do not help the hearing loss, then we will I guess look at alternatives, I have to remind myself to take it one step at a time and not get ahead of myself with worry.  Tonight is Aiden's sleep study, so we shall see how that goes.  Then tomorrow, we see the ENT again for the check up after all the testing to, hopefully, get the referral for his ear tubes and maybe get the surgery date.  I just want my little Tater Bug to feel better and not have constant ear pain.

Scott's asthma has not been getting better.  We have been asking his pulmonologist for a nebulizer because Scott is deathly afraid of his inhaler, I mean more than just screaming while we put the mask on him.  Scott screams bloody murder and will claw, bite, do whatever it takes to get as far away from the inhaler as he can, and then when we do get ahold of him, usually Eric holds him down while I have to place the mask over his face all the while we get to see the terror in his eyes.  Yeah we did that a grand total of twice before we just decided we did not want to terrorize our child.  His pulmonologist gave us a chewable medication for Scott's controller med, but said we should still work with Scott on becoming okay with the inhaler for emergencies.  I get that he will always need an emergency inhaler, and we do try, but we cannot traumatize him anymore over it.  Well his controller med does not do squat, which I get he's not inhaling it so it is not going to be as effective.  Scott started having bad coughing fits, when he gets a cold, most of the time when the first cough starts within 24 hours Scott has a full blown URI or bronchitis and sometimes it will even be pneumonia by the time we get in to see the doc the next day.  So we took him in and saw a brand new doc, and thankfully it was still just a head cold at the time, but the doc looked at his history and asked why we don't use inhaler meds for his controller med anymore.  Needless to say, I had brought his inhaler with me so I just took it out and showed the doc Scott's reaction, which was scream bloody murder, run to the door to the exam room, and continue to claw at the door until his fingers bleed; and that was just by me barely lifting it out of the backpack and putting it right back in.  It took all of 20 mins to calm him down so I could talk to the doc again.  The doc then prescribed us the nebulizer commenting that it should have been prescribed much earlier and changed Scott's diagnosis from asthma to reactive airway disease.  All in all, we got what Scott needed and he currently rocks his breathing treatments now, which are twice a day and he does not have nearly as many problems throughout the day any more.

Aiden saw his new neurologist in February, we switched because his old one did not want to change his seizure medications because even though it kept him asleep 20 hours out of the day, it took care of his seizures.  My thing was, was the doc really sure it took care of the seizures or was Aiden just sleeping through them, as they are only absence seizures?  Any who, I like his new neurologist, she is very thorough.  She is concerned about Aiden though because he has floppy feet and no reflexes.  I know those are not necessarily things to be concerned about, but the doc is worried about a neuromuscular disorder when combining those with his seizures and his overly huge head.  So we get to go to a ophthalmologist who specializes in looking at the part of the brain behind the eyes, and another 24 hour EEG.  Those appointments are not until June and May, respectively, so we have a little bit of time to prepare Aiden for them.

That is a lot of information to update everyone on at once and I apologize.

In the meantime, we have been taking the boys to the Museum or Flight here in Seattle.  They love it!  Their new obsessions are now airplanes and I have no problem feeding that either.  I know that sounds horrible, but at least airplanes are age appropriate for well any age.  Both boys also have their own taste in airplanes: Aiden's loves the military jets, his two favorites are the B2 Bomber and the SR71 Blackbird; Scott loves the prop planes and commercial jets, he has even began to venture into the world of space shuttles.  I am learning so much about planes just from walking around the museum with the boys, it is amazing.  We have also become members at the Seattle Aquarium and the boys, and Eric, love watching the otters there.  Plus they have small tide pools there with sea cucumbers, sea urchins, and star fish that you are more than welcome to reach in and touch and play with, the boys are not quite so sure about those, but over time I'm sure they will become okay with it.

This all keeps us pretty busy and lately I have been feeling pretty lonely with all of this going on.  You would ask how can I be lonely with all of this to keep me busy?  I do not have many friends and the ones I do have don't really text/call all that much.  Which is partly my fault, communication does go both ways.  But I always feel there is something going on with us and that everyone else thinks we're just drama queens or something like that and I am not the best model of social skills, so I choose to let them communicate when they want. Which leaves me with no adult communication most days except for therapist and doctors for my sons.  Heck I feel like my sons' doctors know me better than most people as we are in the office more than not.  I think what brought all that on was the fact that Eric's brother is getting married this summer and only Eric is able to go.  This is due to a few of Aiden's specialty appointments that are scheduled during that time, and those appointments can only be moved if we want to wait another 3-6 months for them.  I just hate that we can't be there as Matt is by far one of the boys' favorite uncles, my big brother is the other one.   My parents and little brother are coming for a visit in August, which I am completely excited about.  I miss them, I miss all of our family.  Now comes the planning to try to make them want to move out here and stay with us...

As for Eric, he is staying really busy at work.  They still have him working overnights at the hospital, which is good because that does leave the car open for me to take the boys to and from all of their appointments; but at the same time it stinks because half the time the boys are still asleep when Eric comes home from work and are in bed by the time Eric wakes up to go back to work.  I believe we are getting into a better routine with it all though, and we are doing fun things on the days Eric has off which make it ever better.  Eric has also started going back to school to obtain his bachelor's in health care administration, which I am so proud of him he is making better grades than I am.  It funny, when we both get some down time without the boys, we are both usually doing our homework, we resemble classmates instead of husband and wife on those times.

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