Another year...

Where has the time gone?   Another year drawing to a close.  It's hard to believe!  I did an update for you a week ago, but before I posted....it deleted and so instead of throwing my iPad in a fit of rage, I calmly walked away and ate some cookies.  Seems logical.  So I will try this again.  Many things have changed since then anyways.  Here are a few things we've been doing:

 

Patrick's Christmas Party!  Fun and exhausting:)

  

Avery's Band and Choir Concert.  AMAZING!!!  She did awesome and her school has a fantastic program!

  

Sleep study- saying he hated it, would be an understatement!  Best part was that after he cried himself to exhaustion for an hour, he held my hand and fell asleep.  My sweet boy!

Upper GI-he actually enjoyed this test, even though we were all at U of M for 7 hours:). We knew it was going to take a while, but because of his low muscle tone, his digestion takes a lot longer!!

We found out that he does have obstructive and central apnea.  He will see ENT for tonsils and adenoids and we will go from there.   He also has malrotation of his intestines.  We are waiting to form a game plan for that, because it may require surgery to correct because it puts him at higher risk of bowel obstructions.  So I will keep you updated when we know.

We got both of these results the 2 days after Christmas.  I will be honest and say that it knocked me down a bit.  We have always been grateful for his health and we still are.  But sometimes, no matter what we do to keep him healthy, there are things we can't control.  That is a hard pill to swallow.  We always tell ourselves that we are more fortunate than others....but sometimes this phrase irritates me.  Not to say that I am not grateful.  I completely am....but it also makes me feel like its not ok for me to be upset that my child has something that I don't want him to.  Or who wants to be on the other end of this phrase??   I try with all my power to be positive with this....but some days I don't want to be.  I think that's fine too.  So today, I don't like that phrase.....tomorrow, I may be fine with it.  Hey, I am a woman, it's my job to change my mind without notice. Deal with it! ;) 

More pics:

 

I got new braces and shoes!!!  Pure Stud!

 

Kissing Bubby:)

Enjoying my swing

No explanation needed:)

Please keep our PKS family in your prayers as some of our kiddos have been in and out of the hospital with illness and some have some surgeries coming up soon!!  

Happy New Year to All

XOXO

1 year ago today....

I wrote my first blog.  I started this because I've always wanted to do a blog and I thought that PKS awareness was the best way to do it.  I've found it to be the best therapy for me and an even better way for people to see just a small bit of what a family goes through when they have a special little one in their lives:)   I really appreciate those of you who share it, respond to it or just read it!!

Last year I started the blog, hoping to help people understand PKS a little more. To understand what

our life looks like. As each year passes, my acceptance of this disorder becomes easier to manage.  I have fewer days of wanting to drop kick PKS off of a cliff and make it go away.  These days do exist still, but much, much less.  I have become somewhat grateful in many ways.  So I wanted to share a few things that make me thankful for PKS...

1.  Patrick does not have to deal with all the stupid shit that we all have to deal with on a daily basis.  Examples:  violence, hatred, kardashians, vague Facebook posts, gun debates, political debates, why the Tigers didn't make it to the world series, etc.

2.  We have learned to stop and appreciate the little things.  Reaching for a toy or drinking through a straw are huge celebrations in this house and we LOVE it:)

1 year

3.  He is happy just being loved.  I don't have to over think it(even though I probably still do;))  He can sit next to me on the couch and be happy or lay on the floor and be happy.  Mind you...he still has his fathers temper.

An oldie....5 months old

4.  Patrick just is who he is.  It's really that simple.  All 3 of our kids are completely different.  We accept them all just the way they are!  Sure he needs a little more help.  But this is the way he was made:).   I can't consume my life wondering why.  It's up to us, to give him the best quality of life we can, and make him happy, just like we will with Avery and Jameson!

5.  I am completely, totally 100% grateful for our PKS family!!  Had Patrick never had PKS, we would not be part of this amazing family.  In the world we live today, there is so much competition between parents.  "Look what my kid does....my kid did that months ago...look at me...I can bake 100 cupcakes from pinterest, make 50 party favors and go grocery shopping with my extreme couponing organizer all by myself!".  Good for you!   

Our PKS family is such a safe, non judgemental group of parents, who truly understand what we are all going through.  But the biggest part...we are all genuinely excited and happy to see our children make progress, achieve milestones, get better from an illness, etc.  We are so lucky to have a group of people to talk with, vent to, listen to, share things.  This is why PKSkids is such an important organization.  It brings us together every other year to be with each other and share and learn.  PKS doesn't have the recognition like many other disorders yet.  These parents are all working to make this happen.  So that future parents who have children diagnosed, will know what to expect, what tests to get done, what intervention is needed, and they can get it sooner!

Waiting for the snow...

So, yes, there are things about PKS that I am thankful for.  Now, don't get me wrong, I still have days when I want to cry all day with a carton of mint chocolate chip ice cream, in my bedroom and just watch Bridget Jones and any other really crappy chick flick to escape it all.  And when i have those days, I try to do that....if Jameson lets me:). We also have found that humor has helped us as well:). 

Some people don't get our sarcasm...and that's ok;)

Random picture.  Aren't they cute?

This year I have had trouble figuring out what to do to celebrate this great day to spread awareness for Patrick and his friends. Well last night it hit me...
Monday we were scheduled for a phone appeal with the State of Michigan.  We pay into a secondary insurance for Patrick through the state.  Well they denied his modified bed and our private won't cover either.  After appealing several times already, I wrote up a long letter stating why he needed it.  Well, they still DENIED it again on Monday!  They don't want to pay for it because the head of the bed moves up and they don't feel it's medically necessary.

This is why he needs a safe bed.  Comfy?

So needless to say we are disappointed.  This, unfortunately is not out of the ordinary for many families with children with disabilities.  This is where my problem lies.....why do families have to write letters, set up appeals, ask for legal advice, etc to get something paid for, for children who are clearly in need of these things?  They have never met my child and they presume to know what he needs and does not need.  We are not trying to scam you for a massive pieces of equipment that will take up a majority of the space in my house, just for fun.  We are doing it to improve our child's quality of life.

So this year for PKS awareness day, I am writing my state representative.  I want to know what I can do to help make this process for families like mine, less stressful and more focused on what is in the best interest of the child/person in need.  Yes, I am mad, frustrated, etc.  so instead of just whining about it, I am going to write.  I figure...what the hell??  What do I have to lose?  I feel like more people need to tell people when they are not happy, I mean we put them in their positions!

It's frustrating to not know how you're going to get the things that you know your child needs.  You go through the process and do everything the right way and yet, you sit in the room at the end of the day and wonder what the heck your next move is.  This is why we started fundraising and starting a fund. And this isn't just about Bubbys situation either.  Luckily we have a great support system.  What about families who don't?  So if nothing comes of this, at least we tried.

I could go off on several different avenues with this....I would love to go after health care companies themselves and their stupid health care costs, or even more stupid inflated health care costs for modified equipment, I could go on and on.....but I have to start somewhere!

Ok...off my podium and off to writing.  Giving a voice to my boy and so many others who can't speak for themselves!

Much love to all and please take a minute to just visit the pkskids website and read about PKS and some of Patrick's friends!  They are pretty awesome:)
PKSkids

Thankful...for sleep tonight:)

Forgive me for any errors, Tim and I are working on 2 hours sleep because my sweet boy decided he wanted to hang out in the ER all night:(. Last night he spiked a fever of almost 104 and was shaking, vomitting and lethargic, so we thought we better take him in.  Of course as soon as we get to the ER and walk down the hallway, Patrick perks his little head off Tim's shoulder and starts his, "ta-ta-ta" noise that he does when he is happy...of course:). Little stinker!!  But he rarely gets sick and I have never seen him this bad.  I don't like to mess around with him, so off to U of M we went!  They ruled out all the big stuff (ears, pnemonia, UTI) and chalked it up to a virus.  Patrick almost enjoyed it there a little too much...hoping he doesn't make it a habit;). He slept a lot today and we finally got some applesauce down tonight, and he seems better, still a little warm.  Hoping we can rest up tomorrow and see family Friday.  We shall see...

I make this look good!

I wanted to show off his new toy!!  So excited!!!  This is his gait trainer, that will help him learn to take steps!  He loves it so far!

Next I want to say how thankful we are for a few things.  First of all, his fundraiser was a huge success!!  We sold a ton!  Way more than expected!!!  So thank you!!!!!  I would love for everyone to email or text me a pic wearing the shirt when you get them....I have a plan:).

The one thing I would like to share this year, that I am truly thankful for, is the care that Patrick is getting here, both medically and in school.  The ER was so efficient with him.  But the most meaningful thing that they did, was they talked to him like they would any other kid.  You would be surprised at how some doctors are kind of timid or nurses who aren't sure what to make of him.  He isn't anything to be scared of just because he can't use words to communicate.  He still deserves to be talked to just like any other kid.  We have had doctors who wouldn't talk to him or almost didn't know how to handle him.  The nurses and doctors last night talked to him and were just so sweet to him in general.  Very compassionate and kind.  That is a big deal to us!  So thank you U of M!
Next are his teacher and therapists at school, whom we are so thankful for this year!   They truly love him.  The one thing I love most about them, is they do the same things with Patrick, that they would any other child.  His activities are so cute and funny.  My favorite part of the day is seeing what he brought home! We know that he doesn't do a lot of it(he will someday).  But they sit him down and go through the process with him, which makes me smile:). It means so much to see him just being treated like anyone else.  He is learning so much from it.  Sure there are things he won't be able to do, but they find a way to adapt, without him just sitting in the corner doing nothing.

Love this...all the things he is thankful for!

His little hands as leaves.  Cuteness..

So I guess I am thankful for the people around us, that just love Patrick the way he is. I don't have to explain why he is the way he is.  They care for him and treat him like anyone else.  Sometimes it can be frustrating walking through a store or the mall and people stare at him(I mean who wouldn't?  He is awesome).  So when you find people who don't think twice about coming up and talking to him or hugging him and don't care that he may not talk back or hug in return, you are thankful.  

Happy Thanksgiving to all!

Is he spending his days with other women???

Yes, he is!  He comes home everyday smelling of perfume.  No, not my Timothy.....but my sweet Patrick!  Everyday he comes home from school and he tells me about his day, and we cuddle.  I always tell him he smells like other women.  He has a perfume smell everyday, which makes me happy!  It makes me happy because I know he is getting loved!  He is getting cuddled and held and they are just loving him.  How could I not be happy about that?  One of my biggest fears about sending him off to school, was that he would sit in a corner all day or not get any attention.   I know that he isn't.  He is loving it and they send notes home everyday telling me how they are having so much fun with him!!  He is making progress with choice making and today he rode on a modified tricycle!!  The bus is going great, he is doing well with the transition and we are so happy.

First ever school pics.  

I am pondering the meaning of life...

I think we all realize I am not really good at this blogging thing.  I reeeeaaaaalllllyyyy want to be, but I can't do it as much as I would like:(. I hope I get better!!!

Now, December 4 is coming soon, PKS Awareness day!!!  This will mark the 1 year mark of our blog too:). I really want to do something for it.  I have had a few ideas, but nothing has gone through.  I really want to bring more awareness for our PKS kids, so if you can think of anything I could do, email me:). I would be willing to speak, or bring Patrick places, whatever.

As most of you know we are starting a fund for Patrick, which is why we are having a fundraiser with those awesome t-shirts.  There are so many things about having a disabled child, that you don't realize you have to worry about...special needs trust funds, Will, vans, ramps, house modifications, equipment, etc.  This is why we are starting this fund now.  All of these things are expensive!!!!  We all know how well we get along with our insurance companies, and since Tim and I aren't rolling in the dough, this is going to be extremely helpful!!!! We can't thank all of you enough for your love and support!!!  Patrick is so lucky:).

Let's see, what are those other 2 kids up to??  Well Avery is great.  Doing awesome in school, and making friends, and going through the normal fun middle school shenanigans .  We spend a lot of time just being thankful that she is a good kid....and that we aren't going through that time of our life again...no thanks!  Then there is Jameson....what can I say about him.  He is crazy, in the best way possible!!!  He is running around, giving high fives, making out with his stuffed animals(what can I say, he takes after his dad) and just generally making us laugh.

Hanging with my sissy

Don't let that face fool you...

Check out bubbs:)

So things are good.  We are happy to report that Patrick got his bath chair and his gait trainer(walker) is in for us to pick up.  We have appealed to get his bed paid for, we are waiting to hear about that!  So keep your fingers crossed please!  We are not sure how all of these things are going to fit in our house:).  

I'm chilling 

I am going to share the links again for the shirts.  If anyone wants to know about Patrick you can share my blog with them:).   We are so thankful!  Because we have such a great support system, I need a favor and ask if you can keep one of my very close friends in your thoughts and prayers.  Her family has been through a lot in the last year, and continues to have a need for support.  I know I am http://www.3elove.com/pages/i-love-somebubby-with-pks-fundraiserbeing vague, but I will explain when I can.  Just say a little prayer please:).  

http://www.3elove.com/pages/i-love-somebubby-with-pks-fundraiser
http://www.3elove.com/pages/i-love-someone-with-pks-fundraiser

Bittersweet School

Well the moment came and I lived to tell about it!  My Avery and Bubby started their new adventures in life of middle school and pre school.  I was a mess on Tuesday morning.  The nerves turned to nausea, which I didn't enjoy in the morning, because it reminded me of being pregnant(which I am NOT), which turned to just an empty achy feeling in my heart.  I am so excited for both of them, as well. I mean part of my sadness that day was that I wasn't at school myself welcoming a new group.  I love the beginning of the school year!!!  New clothes, new supplies, new start.  But when I am on this side of the first day of school....it's much harder!

 Now I knew Avery would be fine, but the nervousness for her exists because lets face it....middle school is not the best time in your life. I just wanted her to come home and tell me she wanted to go back and that her experience wasn't like Mean Girls or a really bad after school special.  It has been great so far, and actually I feel like I have my old Avery back.  For the past year or so she has been in somewhat of a tomboy/hipster phase, wearing a lot of t-shirts and jeans.  Which I am fine with.  We try to let her find her style.  But she came home Tuesday and we talked about her day for a while, then she went into her room and picked out clothes for the week.  She actually wore a skirt and leggings yesterday!!!!!  This excites me only because...This is more the Avery I know and love:). I am sure we will have many more phases to go, but I am glad to see that she is back to her "roots.".  She even told Tim, "Guess what?  I am wearing a skirt tomorrow and I haven't worn one in 2 years." (in her Avery voice).  I am happy to see her happy and confident and excited about school!!  Also...she tried out for a fast pitch softball team and MADE THE TEAM!!!  We are so excited for her!!!

Now on to my bubby.  When I think about my boy out in the world by himself in his stroller and cute little backpack, I cry.  My heart sinks.  It was hard with Avery too, but she can always come home and tell me about her day and this aspect is what makes it the most difficult with my Patrick.  I don't know if people are getting frustrated with him, ignoring him, leaving him sitting by himself, etc.  those are my fears.  I am pretty confident that none of these things are happening, because I adore his teacher, but at the same time I want to make sure he is getting enough attention and is safe. Which Is any parents fear.  But he can't sit with me when he gets home and tell me about it.  BUT....we try anyways:). He sits with me and rambles on and I am sure he is telling me how much fun he had.  This makes me happy!!! It is important to me that I sit and talk with him after school, like I do with Avery, even though he can't use actual words...yet;)  He has been super happy when he comes home!!!  I told his teacher, that i am not sure what they are doing to him, but to keep it up, because he is so happy!!!  He has a notebook and his teacher fills me in on what he does everyday, what he eats, his PT, his OT, whether they do music, books, his diapers.  In this aspect, I am more fortunate then other parents, because not many parents get that much info.  I feel very lucky that Patrick is where he is.  But a mothers heart cannot be told that it doesn't hurt to see his bus drive away.   So far he is loving it.  He was cracking up laughing yesterday when he was getting lifted into the bus.  The bus driver and aide, fell in love wit h him instantly!  I am soooo excited at the end of the day when his bus pulls up and I get to read about what he did all day!  So far so good!

Patrick's teacher sent me this:). His first day!

Patrick drew the brown line from the bus to school.  Pretty impressive he stayed in the line after one day....haha:)

Jameson is adjusting well....of course he is, because he gets all the attention now.  He is an attention whore:). I actually went grocery shopping yesterday with one kid....weird...and so much easier:). We also went and had lunch with Tim.  We did that a lot this summer too, but again, weird with one kid!

Only other updates on bubby....he went to the kidney specialist last week, he still has some hydronephrosis, which he had while I was pregnant with him.  We just have to monitor blood pressure and UTI's.  Both aren't an issue as of now.  He goes back in 6 months and if nothing is different we will go yearly:).  Now we are waiting for an appt with the sleep clinic and neurology.  The pediatrician wants them to follow him to rule out any issues with that.

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:)