Venting....BEWARE

Before I start, I want to say that we have it easy compared to a lot of other families out there!  We feel lucky that things tend to always work out.  We know that what may seem like a frustration to us, is something someone else would be thankful for.  We get it....BUT...sometimes things just irritate me, and I have the right to express it, just like anyone else, so I will vent to all of you!!!  Besides, I think I have been mostly positive thus far, but if you really want to know our whole story, you'll have to hear about the bad days too...

So some days(and even weeks) I feel like a secretary.  I can spend hours on the phone just taking care of appts, etc for my kiddos.  No big deal.  I liked being a secretary when I had that job;). What frustrates me more then ever at this point in my life.....insurance companies and stupid people!  I don't mind being on the phone all day taking care of stuff for my kids, because it's my job, but guess what....if I am calling your business, it's  also your job to be courteous to people and to at least pretend you care.  What is wrong with people today that they just hate working while they are at WORK!  You should be thankful to have your job.  There are a lot of people out there who would love to take your place!

I realize this is a 2-way street.  I know people who call businesses can be turds too, so i get that! I know how frustrating it must be to have someone on the other end of the phone being rude....wait....isn't that my point???  But every new call should be that...a new call!!  Most of the time I can kill them with kindness, but sometimes you just have to tell people that just because your miserable, don't make everyone else's day miserable too.  This frustrates, me the most when these people are working in a field that deals with children.

Now this leads me to the stupid insurance companies.  What does it take to get good insurance without selling your children and eating franks and beans everyday to pay for it.  Then when you do these things, they still don't cover anything!!!!!!!!!!!!!!!!!!  Oh, I cut off my arm and give it to you every month........oh, thats not enough, we still need a$3000 deductible.  You try to buy the non-HMO because it's supposed to NOT manage your healthcare, but yet they still do.  One of my favorite experiences was, I was once told by Blue Cross that they wouldn't cover Patricks physical therapy(which was a covered benefit) because their doctors didn't think it was necessary for him to have it.  You can imagine how pleased I was by this statement.  Basically I told her I was thankful for those doctors and their hard work behind their desk, diagnosing my 3 year old who has a rare genetic disorder, who can't walk, crawl, speak, etc., and for looking out for his best interests.  He doesnt need therapy, what was i thinking???  Thanks to those doctors for taking the time to get to know Patrick and realizing he didn't need it.  Sigh....

Then we pay into a secondary insurance to help offset some of the deductibles, and things not covered, only to find out, they don't cover half the stuff that they used to.  So we have to now look into a 3rd for Patrick that will cover more medical supplies or we can pay $1.50 per diaper when he outgrows the store ones.

Right now we are just trying to get him a bath chair and a big boy bed that will keep him safe, because he doesn't realize when he is rolling around.  We started this in March.  We are still getting letters that they need more information as to why he needs them.   WTF???  The letter and info we have already sent them over the past 5 months still isn't enough???  What is wrong with this picture???  I would rather have them just come to my house and meet him.  No we are not scamming the system....we actually need it.

 Like I said, we are only one family going through these things, just like millions of others out there, who have much more frustrating stories than me!  I read about all of our other PKS families and the things they endure to make sure their children have what they need.  As well as just people and families in general who are trying to get by like this.  But the thing is, it can wear you down, then fire you up to do more.  What else can you do right??   I do want to do more to change things, I just don't know what it is yet.....

I need to stop now because nap time for the boys is over.  I wont apologize if people thing i am complaining, because I am not.  This is my therapy because I cant afford to go to a real one because all my money goes to the insurance companies and its not a covered benefit!! Thanks for listening to my brief vent...it was therapeutic:)

Ending on a happy note....a few pics:

Avery driving with Uncle Brian

My boys watching baby Einstein :)

My Avery....

I could write a book about my Avery.   I truly believe we all have a purpose and I always knew that Avery would have many.  She has always been such a sweet, easy going kid.  I don't want people reading this and thinking, "Oh God, she is bragging about her kid."  Well, yes I am.  I don't brag about her too much, but I am allowed:)

Since Bubby came along, Avery's life was forever changed.  She went for 8 years as an only child.  She spent so much of her life around adults, because she was the first grandchild.  She loved Patrick and being a big sister from the start.  Never was jealous, or had a hard time with the transition.  I think part of it was because of her age.  Avery was with us the day that Patrick was diagnosed.  She sat in the room and heard everything the same time we did.  Mind you, we didn't realize they would know anything at the initial consultation, but his doctor was spot on.    So not only did we have to process it, so did she.  But she did it in the same Avery fashion as she does with everything else.  We talked with her and the doctor and genetic nurse spoke with her everytime we went in.

We had know idea how PKS would affect us, let alone Avery.  Would she get upset with the extra attention that he may require??   There are so many things that Avery has had to compromise on and never complains.  She doesn't even realize she is compromising, its just our way of life.   She doesn't complain when I have 4 days in a row of appts or therapy, she just knows its what has to be done for her brother to help him and she just goes with it. She doesn't know it any other way.  Which we are grateful for..  She plays with Patrick, reads to him, holds him and just loves him!!  We couldn't be more proud of her.

Bubby in a stander at therapy

Now throw Jameson in the mix and this poor girl is just in trouble :)  I mean this in the nicest way possible.  I love both my boys dearly, but they are definitely a handful together.  They feed off of each other.  Jameson screams, so Patrick does because it annoys him.  Patrick tries to get his voice in the room very loudly and Jameson tries to out do him.  Its quite entertaining actually:)  Going anywhere takes twice as long.  Carrying 2 kids to the car, getting them in their carseats, double stroller or 2 strollers, packing food, etc to keep them entertained while we are there to limit breakdowns. blah blah blah.....you get the point.  I love being home with them and being able to do these things, but in the midst of all of this, I have to think about how it affects Avery. But realistically it really doesn't affect her. Its more me over analyzing it.  Our life is what it is. We are much more fortunate then a lot of people.  I am glad that she is growing up in the family that we are.  I want her going through life knowing that not everyone is the same and sometimes, other people may need a little more help with things. Families shouldn't all look the same.  People don't all look the same.  Everyone's situations are different, and thats the way it should be.

Monster Jameson eating spaghetti:)

So there are many days when we have things planned and we just have to change it, like today :)  Patrick decided to get up at 4:30 and party.  He was happy as could be, but LOUD and chatting away:)  So then Jameson got up.  Luckily, he was easy to put back to bed and I brought Patrick into bed with us and cuddled while he told stories.  He eventually fell back asleep around the time Tim got up.  We had plans to do things, and I still tried, but both boys were incredibly cranky....so instead, I am letting them rest and here I am typing, we will try again this afternoon.  I know with both of them its not worth trying to take them out on certain days like this by myself.  It would be painful for all involved :)  Some days I will, but I can usually tell by how fussy they are.

I couldn't put these pics where I wanted because of my iPad:(. Sleeping bear dunes:)

Sleeping bear dunes on a cloudy day.

Visiting Cherry Republic and spitting some pits:)

So we try to make an effort to do things with just Avery. Lately we go up to the park and play a little softball with her.  She loves to play cards and board games, so we will do that after the boys go to bed.  We decided that we would take her on her own weekend trip up north (if your not from Michigan, thats where most people go on weekends....pretty much anywhere north of Grand Rapids).   We went to visit our friends Will and Bernie, near Traverse City.  Will went to Western Michigan with Tim and I call him his man wife.  They are the amazing friends who we called and said we were moving back to Michigan, and they said without batting an eye, that they would be down to move us :)  They both come from amazing families who make you feel right at home when you're with them.  They all knew this was Avery's weekend and treated her like royalty.  She got a tour of Northwoods Soda, got to ride a Mule with Bernie (quite entertaining), sat by a fire, got to go watch live music, sleeping bear dunes, visited Cherry Republic and spit cherry pits, but best of all, got to play cards with a good ole northern Michigan family.  There is nothing like it!  She LOVED it!!!  It was nice to just hang out and relax with her and Will and Bernie's family.  I can't say enough about them!!! 

The best part was just to do things with Avery, without scheduling around the boys.  She had so much fun and it was definitely worth doing.  I hope to do this with all 3 of the kids.  Bubby and I get our own little time a lot.  We venture out to certain appts. together without the other 2. My favorite thing is when Jameson is in bed, its almost like Patrick knows.  He is so happy :)  So sometimes we feed him a little ice cream and just let him hang out while we play games with Avery :)  Jameson will get his alone time too, when he isn't already the center of attention.  This kid is truly one of a kind...and I mean that in the best way possible!

I guess I overanalyze things sometimes.  Wait...no...A LOT.  I know it drives Tim crazy :)  But I feel like Avery is at that critical age, where we need to make sure we are helping to guide her to make good choices.  Sometimes I feel like we have to stop and just make sure we are letting her do the fun, kid stuff too, because she is growing up so fast....tear :(

Eyes, Ears and other stuff...

Well today is the first day in a week that we didn't have any appointments, so I thought I would update:).   Patrick and I have been spending some quality time together this week in Ann Arbor.  He had therapy on Monday, which went pretty well.  He just does not want to put weight on his legs right now, so we have to work on that.  I don't want to put weight on my legs most days either;).

Enjoying a swing

Tuesday we ventured over again, but this time it was to see the audiologist, whom I adore!!  She is great!  We've only seen her once before, but she remembered details about our family and always takes the time to just sit and talk before she gets started.  She is awesome with the little bubby boy too:). Everything looked really good with his ears.  His ears are all structurally normal, with the exception of really small holes:).  He was responding to her noises, which he didn't do really well the last time.  When they do this test, they put you in a sound proof room.  Patrick must of loved the quiet time away from his brother, because he decided to take a snooze.  While he was sleeping, she was able to do another test (which we were not planning), which showed his brain waves comparative to his sound waves.  Everything looked perfect!!!  Yay!!!  He actually has "normal" hearing.  Now what he does with what he hears is another story.  But we are truly thankful for this good news!!!  I was really happy after that appt, and was seriously thinking of investing in a sound proof room after that;)

We left there and headed back to Avery's softball game.   I thought it would be a good idea to bring the boys(Tim included) out in the 105 degree heat index.  Jameson and Tim lasted about 2 minutes, before they were dripping in sweat.   So I got to watch the game all by myself, which was actually quite enjoyable.  Avery did great!  She pitched half of the game.  They lost in extra innings, but they played really well.  And Avery and I looked like we had just been to a waterpark afterwards!

Playing ball with daddy:)

Wednesday we were back to Ann Arbor for his eyes.  Now before you think I am crazy for not scheduling these appts on the same day.....I did.....the last 2 times they were scheduled.  I have been trying to get these appts in for months.  We've had to cancel due to the flu and other reasons. Now,  the eye doctor, by far, is my least favorite!  It can take forever!!!!!  I usually never have to wait for his appts....except here.  This day would be no different.  I thought we would be in the clear because he didn't need to be dilated this time.  Nope....the line stretching out the door, was indicator 1.  The lady asking at the desk, why she's been waiting an hour, was indicator 2.  So we were there for over 2 1/2 hours.  But his eyes look good.  They were very pleased with his progress.  We need to just keep an eye(haha) on his wandering eye, so that we can inform them if it's getting worse, so he doesn't rely too much on the other one:)

Now we just finish up his summer therapy and go to the pediatrician for a check up (and lots of paper work for school) next week and then he's off to school in September!!  My big boy!!

Tim and I were fortunate enough to have a little detox weekend last week.  We went camping, just the 2 of us, on lake Michigan:)) It was amazing and relaxing!  We both love camping!!!  There is something so tranquil about it.  Everyone there is so happy and they take things slower.  Just enjoying being outside.  We were able to walk to the beach, which was beautiful!  If you haven't been to a beach on the west side of Michigan, you're missing out!  We feel lucky to have people around us to take care of the kiddos, so we can do this sometimes.  We come back so refreshed:).

Next weekend we are going to take Avery on her own little trip, without her brothers.  Now don't get me wrong....I love my boys, but Avery makes a lot of sacrifices for them and NEVER complains....ever!!!  She loves her brothers!  So we feel like she deserves her own little time with us, without us saying, "you're brothers are tired or hungry or stinky."  Besides...Jameson and Patrick won't ever know the difference;). So I will definitely post after that with pics and stuff!

Alright...time to stop ignoring my kids:)

Changes ahead...

So many changes headed our way in the next few months, have this Mama happy, scared and sad.  My kids are growing before my eyes and makes me so happy to see how they are blooming.  But then I think about how fast it is going and how I need to let go a little, and then it gets hard.

My sweet Avery will start middle school this fall.  She will be a mature 6th grader.  I have so many mixed emotions for her.  Middle school can either be really fun for kids or really not fun.  I think back on how awkward I was, and how you just don't know what the hell is going on in life, although you think you know it all:)  I am hoping she just has fun and enjoys it and pays attention:). Having taught this grade, makes it somewhat easier to see the stage she is at, and makes me see how she is just like all the kiddos I taught.  I used to wonder why I had to repeat myself all the time in class.......now Tim and I are experiencing that at home.   I can now tell Tim, "it's just her age," because it really is:).

Avery made the All Star game for softball on Saturday.  I won't say that it's in her genes, because that would make me sound like I have a big head....but I kind of do have a big head.

So when I send her off on the bus to middle school, I will also be sending my sweet Bubby off to school as well.  He will be attending a school in a district near us, that has disabled children, ages 2-25.  We get to choose how often he can go, so as of now, we are starting him 3 full days.  We can adjust his IEP, if we feel he needs more or less.   I didn't want that much in the beginning, but I feel so comfortable and confident after meeting his teacher and therapists.  They seem amazing and, of course, they all fell in love with our Bubs as soon as they met him.  I worried about how much he would be able to tolerate, but then I realized, that he was in daycare for the first 2 years of his life, from 7 am to 5 pm.  So he should be ok.  I also feel like I want him to have more than just being home with me.  He loves people and to interact socially.  So I am hoping this will help him to grow more.  We do spend most of our days now, in therapy or school together or doctor appointments.  But I am excited for him to get the routine and social interaction regularly.  But I am scared and nervous too.  He is doing great right now.   We feel like he is very aware of everything right now.  We think Jameson has helped a ton.  Bubby has to hold his own with him and they are hilarious to watch together.  Bubby is really looking at people and following them with his eyes.  It's so exciting to see:). He also screams at his brother, when Jameson is being a pain (which is a lot:))

He loves his new toy from Aunt Laura:). So does that woman with the pretty,thick, long hair that he is hanging out with. Oh wait...

We hung up his swing in our front yard:)))

Don't look at our lack of landscaping.  The outdoors will be done next summer! 

First boat ride with Uncle Brian.  He loved it:)

I don't even need to caption this pic. 

So now, since bubby will be in school, and Avery too, that leaves me and Jameson.  So now I've been playing with the idea of going back to work.  I can't decide.  Parts of me would love some Jameson time, but I also don't know if I will get bored.  I can't be bored....it's not good for my mental status, therefore, not good for Tim's either:). If we feel Bubby is enjoying school, we may bump him to 4 or 5 days.  I would definitely want to work then.  Decisions, decisions.... I will keep you posted.

At his sisters game

Our house is coming along.  I really need to do before and after pics.  We have painted every part of this house, except for the bigger bathroom and hallway.  We have started to slow down now, because we are tired and broke now:). I will try and do pics this weekend.

Hope everyone is having a great summer!

This is what Jameson does while I take 5 minutes to eat.  Rearranges our wipes.  It was necessary.

Take a minute...

I just wanted to take a minute to just write about these wonderful PKS kids and how this has been a very difficult winter for them.  We have seen so many in the hospital with different infections, flu, etc.  We have also seen too many gain their little angel wings over the last year.   It's just so heartbreaking. Parents work so hard to keep their kids healthy and do everything we think is best for them, but yet sometimes their little bodies can't handle it.  Our PKS kiddos are such a precious mystery, constantly keeping us on our toes.  Please take a minute out of your day to just pray/send positive thoughts, or whatever you believe in, for our little kiddos and their families.

I love my bubby:)

Updates...

It's been a busy week for us!  Appointments, working on the new house, trips and the never ending demands of 3 kids!  Well, I will start with the much needed adult trip to Chicago last weekend for Tim and I.  It was the 10th annual Tom Hanks Day!!  If you don't know what it is, look it up on Facebook:). Basically it has turned into a charity event created by Tim and his friends, but kept going and was made super big by his friend Kevin.  They basically raise money for Tom's charity, Life line energy.  They help supply schools in Africa with radio technology, among other things, I am giving you the very short version ;). So,  he sends things, they auction them off, sell shirts, drink beer.  It's a great time for a great cause.  Check it out:  http://thetomhanksday.com/. http://lifelineenergy.org/

So for Tim and I, it was a much needed trip!  This trip made me realize 2 things. First, I've realized, that to be a good mom, I need to take more time for myself.  And I know some people will think that is not true, but I have come to a firm conclusion, that being solely just a mom, is not healthy.  Now, before you freak out on me, I love my kids more then life.  That is why I spend most days putting them first with everything!!  But, I also have realized over the past few months, that I still need to be me, not just a mom.  I also know that Tim and I are still a couple and I don't want my kids growing up in a house where we are just robots, working, cooking, cleaning, blah, blah, blah....I know they need to see Tim and I, actually liking each other.  And me smiling, not freaking out about whether the laundry isn't done, or how we are going to get to all of our appointments.  I know that I need to take a step back and detox and rejuvenate.  It makes me come home feeling great and ready to play with my kids!  That's exactly how I felt Sunday when I came home!  Relaxed, not hungover and ready to play :). So don't think I am saying I don't want to be a mom, I have been a much better mom this week, because I actually took some time for myself and didn't feel guilty about it:).   And this trip wouldn't have been possible without both of our parents coming down and taking turns watching the kids, so we didn't have to pack them up!!  We are so lucky!!  Thank you xoxo

I tell people all the time how lucky I am to be married to Tim!  He is a pretty nice guy, I guess:). When I married him, I inherited an awesome family, which I am grateful for, but I also inherited an amazing group of friends!  Tim's friends have always just made me feel like I was just part of their group.  I have never been with a group of people who are so welcoming, easy to be with and just fun!   Every time we are with them, it makes me want to hang out more:)  So I have to thank them for helping us have a great weekend too:)

So my bubby boy is doing great!!!  This week he got his ankle braces to help him with standing and keeping them in the correct position.  They are pretty snazzy:).  He had a check up with the cardiologist and everything is great!  He has 2 tiny holes, but they decided to wait for another 2 years to re check them because they don't do anything to correct them at his age when they are that tiny.  So  that can be checked off for a while.  Yay!!  Then yesterday Tim and I spent over 2 hours at U of M getting some equipment picked out for him.  We ordered a bed and a bath chair, pending insurance approval, so keep your fingers crossed please:). We are waiting on ordering him a gait trainer (walker) because we want to his legs to get stronger first, so we are starting some therapy boot camp next week.  He will be going to U of M once a week.  We also have a meeting with the new school district Monday, to see what services he will get there too, so I am excited about that!!  We also learned how to actually use his modified stroller and how to work the base in the house too!  We have been using it, but it has so many things we could use, we just didn't know how.  So that was great info!  We felt majorly accomplished this week!!  We wouldn't have been able to do all of this without my aunt Barb and Jason coming down to help babysit!  Thank you!!!!!!!!!!!!!!!!!!!!!!

Happy with his new ankle braces!!!

Jameson trying to get a cereal puff off of his chin...

Avery is good.  She is starting softball next week (so am I actually:)). She is excited!! She also has middle school open house next week and will get to pick her classes.  She hit a small rouh patch last week, but that was to be expected.  She is doing much better this week.  Jameson is great too.  Causing trouble, in to everything, but we couldn't be happier about it.  He is a little character!

On another note...Please keep Tim's mom in your thoughts, she is having surgery Tuesday.  If you want more info, message me, because I don't know how much info she wants me to tell.  Just keep her in your thoughts and prayers please:).  I will update in a week.

We're still here...just in a different place

You're probably wondering where we've been.  Well it's been quite a ride for the past month.  I have gone to write several times, but things happen, and I just couldn't.  It's been a month of happiness and pure sadness.

This is how Bubby spent his last couple days at school.  Cruising around and snoozing in his wagon with his friend Jacob.

First, the happy part is we finally closed on our house and moved in...yay!!!!  It was awesome of my parents to let us live with them until we found a place, but let's face it, they needed their house back and there are just too many Kelley's!!  Our move was not as organized as we would've liked(but which one of our many moves, has been?).  I like to call it a drive by move.  We literally drove the truck down and threw our stuff in the house and came back to my parents.  Why?  This takes us to the sad part I was referring to....

The week we were scheduled to move, we lost 2 important people in our families.  First was Tim's grandma Kelley.  The sweetest woman you will ever meet.  Someone that I strive to be like and hopefully someday can come close to her awesomeness.  I admired her for many reasons, mostly just the great mother and wife she was.  To be in a room with her, was almost intimidating, because she didn't have to be the center of attention, but she was always the center of the room(if that makes sense).  She raised 5 amazing children, who absolutely adore her, and a husband who worshiped her until the day he died. I truly hope I can be half the mother and wife that she was!  Truly an inspiration!

So a week after Granmda Kelley passed away, my Uncle Ted passed away as well.  This was a long road for my Aunt Barb and Jason.  Caring for Ted in his declining health and watching them, so dedicated to caring for him.  He was an amazing man!  Truly loved his family, including his nieces and nephews.  But his unconditional love for my aunt was an amazing thing to watch.  He adored her!  Even when his mind was going, and he didn't really remember who I was, he would still tell me how wonderful his wife was.   Our family didn't just see each other on holidays.  Our family was always together.  Always!  So uncle Ted wasn't just around us sometimes, he was around us all the time!  This was pretty hard on all of us, but will continue to be hard on barb and Jason.  So please keep them in your thoughts!

There were several things brought into perspective during this time.  One, I am glad that Tim and I decided to move back.  Being closer to family is so important to us.  Growing up and being around my cousins and aunts and uncles, and talking about all of these memories, really made us realize, that that's what we wanted for our kids too.  Not just seeing them at holidays.  Spending summers together and random weekends at grandparents houses.  All of those things that we experienced growing up, we wanted for our kids.  I mean....what else is there?

The second thing I realized, is that I am surrounded by some amazing and strong women in my life.  Both my family and Tim's family!  I looked at how strong his grandma was and how Tim has all of these amazing, strong women in his family and then when my uncle passed, I looked at my own family.  My aunt, mom, my sister, sister in laws are just such strong and amazing women.  I am truly lucky!  Even though some of them have not always had the best situations in life handed to them, they handle things with such grace....much better then a man ever could....haha, just kidding (not really).

So we are trying to get situated here in our new pad.  It wasn't easy, considering the day after we moved in, all of us got sick(except Tim).  It took 2 weeks to get it all out.  Most of it was strep throat and the flu type virus.  Mind you we are not a sick family.  Patrick had never been on an antibiotic before this and Avery had only been on it once.  But the strep was a nasty bug!  This flu season was not kind to us.  It may have been a welcome back to Michigan present.  Avery had the actual flu in December and now strep, Jameson had a double ear infection a few weeks ago and then this virus, and my little bubby boys first ear infection.  I had strep too.  So we are all FINALLY feeling better this week!!!!!

Avery has adjusted wonderfully to her new school.  I told her it was more exciting to be the new kid in the middle of the school year.  The kids get so excited!!!  And they had been waiting for her.  She made friends right away, joined the school newspaper and loves her new teacher!!!  She's already had challenging homework, which makes mommy and daddy happy!!

Next week it's on to getting bubby situated.  We had to reschedule several appointments over the past month, so we are back to the grind.    And Tim is loving his 20 minute commute:)

Well there ya have it....the reasons while we hadn't written in so long!!!  I've missed it:)