Too Tired To Title:)

So I wish I was better at this whole blogging thing.  I don't know where the time goes!  But here we are again.  I guarantee that I will have some grammatical errors tonight, I am a little tired, but really want to update you!

He sat in this position for like 5 minutes.

**There is a video I am trying to download and it isn't working.  But I'm tired.  I will try next time:)

Patrick has been doing well and has been a busy little guy.  He had a follow up kidney ultrasound last week which showed some mild dilation, which he has had all along, so they just monitor his blood pressure and urine.  He went for a physical therapy evaluation in Ann Arbor and they let him try out a few gait trainers, which are little devices to help him learn to walk.  They are like little walkers on wheels.  He tried one in Virginia and wasn't too excited about it.  But the one he was in last week, he loved!!!  He actually moved it a little bit on his own.  I was very happy with how well he did, considering he hasn't been in a stander much since we moved or putting weight on his legs as much.  We are going to try one more next time and then we will order one, which I am soooo excited about!!  We are also trying to decide on bath chairs as well.  It's a busy, busy time.  He gets fitted for ankle braces next week, tomorrow we are going on a field trip with his school, then we have to do another IEP before we move(which will hopefully be done by March 15).  I still don't want to jinx the house, so I will keep you posted.

This is Jameson watching Beyonce during the Super Bowl

And here he is trying to steal Avery's book.

 It's so frustrating when these kiddos just can't tell you what's bothering them.  Partrick had one of those days today.  Something was bothering him and he just couldn't tell me what it was.  I tried everything....but he just wasn't happy about something.   I knew he wasn't in pain, just annoyed by something.  He eventually settled down, but these are moments that are just frustrating.  He can't just say, I am cold or hot or hungry or maybe I just want to be left alone.  We think we have him pretty much figured out, but sometimes, we just don't know.   I have had a few days lately where I just feel sad(which happens every once in a while).  The other day while his occupational therapist was here, he was just having a hard time with something as simple as holding a toy.  He was struggling and just getting frustrated because he couldn't do it or didn't want to do it.  But either way, it's frustrating to watch sometimes.  Especially when I look over at Jameson and he can pick stuff up without even blinking. Now mind you, we feel lucky that Patrick is where he is, but to think about how hard any child has to work to do these simple tasks, can sometimes bring these moments.  After these therapy sessions, when him and I are both frustrated, are the best times to just cuddle on the floor with him, just so he knows its ok.  I don't know who it benefits more....me or him?:)  But after the cuddling, we just keep trying!!

One of Patricks PKS friends, Simon, is in the hospital, so keep him and his family in your thoughts and prayers!  They are just trying to figure out his seizure activity and he is just not himself:(. Hopefully he will be home soon!

Information overload

So it's much longer of a gap then I anticipated between blogs.  Sorry about that....but life happens:). So updates galore!!  First, we have a crawler!!!  Jameson took off and went from crawling to very close to pulling himself up to furniture and standing, in a matter of a week!  Our life has officially changed!!!!  I never really had to baby proof for Avery and Patrick, but Jameson is a whole new ball game!  I have said No and redirected him about a million times, but it amazes me how he already knows the tone of me and Tim's voice when we say his name.  He will bury his head in the carpet and pout and flash his big brown eyes.  It's the cutest:). But he is learning to stay away from things that are not safe, so that's important!

Places to go

What?  It wasn't me...

Our sweet Avery got all A's on her report card and is highly anticipating her daddy daughter dance this weekend with Tim.  He is also anticpating the opportunity to show off his stellar dance moves in front of a bunch of Avery's friends.  She is doing great and enjoying all the time off from school they've had lately, especially since she got to turn the living room into a gym so she could practice her gymnastics.  It got interesting a few times considering her legs are longer then my whole body, but no one lost an eye or anything, so it was worth it.

Well I don't want to jinx us so all I can say is we had our 4th offer accepted on a house without being outbid.  So far it looks positive:). It's similar to our house in Virginia, but has a 2 car garage and the fireplace I wanted!!  That's all I will say for now because like I said....don't want to jinx!!  Will keep you updated!!

This is how I found Jameson sleeping the other night.  He must be depressed about something. Don't worry, I moved him.

Now on to my bubby boy.  He started going to school with me on Thursdays and he seems to really enjoy it!  I loved it as well, so much so, that I forgot to take pictures:(. But he did great!  He did circle time and held onto little instruments when music was playing.  He was sitting in this little rocking chair and it was by far the cutest thing I've ever seen!!!  He was just soaking it all in!  We played on a slide and took him for a ride on a little plastic sled to help him with his balance.  Then he played in a salt tray with his hands and had snack with his little friends.  It was so fun for both of us.  He actually made it to the end before getting tired.  The teacher and assistant are amazing and the 2 other children were so cute and just loved Patrick:). They were helping him with everything.  It was cute!

So have I mentioned how much I love U of M healthcare??  Well I do!!!  So last week Patrick was going to see the pediatrician for a check up.  This was a different pediatrician then the first time we were there, but in the same group.  I really wanted to see her because she was highly recommended, but she was booked when we initially went.  Well, I can see why she is highly recommended(keep in mind, that I loved the first pediatrician he saw).  Usually before I take him to an appt, I write out the questions I have in my binder so I remember everything.  It just so happened that this trip had a huge list because he is due for follow ups with cardiology, kidney ultrasound and some other things.  From the second she walked in the door, she was amazing!  She had read everything on his record before she came in, she researched PKS before she came in and she just got to work on what he needed.  She hit everything on my list based on reading his records from other U of M doctors and DC doctors. I never had to refer to my binder.....but then again I haven't had to much at all with any of the doctors he has seen there.  So by the time we left, we had a cardiology referral, kidney ultrasound referral, sleep clinic and neurology referral, handicap sticker application and some other things that I am too tired to remember.  

So yesterday we went to see sports med and orthopedics in Ann arbor and again, the doctor was awesome!  She sat with me for an hour learning about our family and Patrick.  She went over so many things that have been on my mind, but wasnt sure where to start.  She got us set up for his ankle braces, she is helping us get a secondary insurance for him, she went over options for standers or walking assistance equipment, bathing supplies, how he should be transported to school(because his stroller harness is not safe enough), getting him properly seated in his modified stroller(we've been having trouble with it), going over options for school.  She just gave me a lot of information that was just fantastic and made me feel better and overwhelmed, but in a good way:). I sometimes have days when I question our move, but when I see the care that Patrick gets, it puts my mind at ease.  I have rarely had to use my binder at an appt, except to put something in it.  Before, I would spend the first 10 minutes of an appt explaining PKS, but so far, they have taken the time to research it before they come in.  Some people think I am crazy for driving him the distance but it's completely worth it, when every doctor he sees has each others information.  That alone saves a parent time and stress!  The other thing is....my bubby is worth the drive:)

I will keep you updated on the house.  I just shared pics of Jameson today and I will hopefully have some of Avery and Tim going to the dance too:).   Thanks for following us!  

Proud of my boy...

2 days in a row....yay!!  This will be short and sweet.  Today Patrick had Physical Therapy with Stacy and he did awesome!!!  It was one of those days where he was showing off his skills.  Like he was saying, "Hey guys, you thought I couldn't do this???  Well, I'm gonna!!".   He sat on a little bench for 20 minutes, then did tummy time and actually held himself up with his arms for a longer period of time.  He was doing some side sitting and pulling himself up as well.  I was so proud of him!!!  I think it might of been because he was wearing his new Captain America shirt:)

Here are a few pics of him showing off his skills for Tim after he got home from work...and no, he is not wearing any pants...thats just how we roll at the end of a busy day:)

Tomorrow is gymnastics for Avery and she moved up a level!!!  Then Thursday is the first day that Patrick and I get to go to class.  I am super excited!!!  I will let you know how it goes!

Sitting unassisted on his little bench, playing with his toy that Ken and Susan got him a long time ago.  He loves it!!

Go bubby

So proud of my boy!!

For the record...that toy is only touching his legs so I could take the pictures.  He was sitting all on his own:))))

Thank You Lew and Jami

What a week!  So my plan was to write after Patrick's appointment with orthopedics and sports medicine in Ann Arbor on Thursday, but that appointment never happened!  Instead I never left the house all last week, except to the store for chicken soup, Motrin and Tylenol.  Yes....the flu had invaded.  It only affected Avery, but she missed 5 days of school.  She had a fever for 4 days and the general crappy feeling, coughing, etc.  I spent the week keeping her somewhat away from the boys and disinfecting.  By the end of the week, her and I were ready to lose it, although,  I'm not sure if it was just from being in the house or the fact that I watched probably 40 hours of Say Yes to the Dress (which I love, but one can only take so much). Thank God the weather was almost 60 this weekend, so we got out of the house!  Back to normal today and we were able to get "squeezed" in on the 28th for Patrick's reschedule, so that wasn't bad.

So it always makes me smile when I see people doing nice things for others, no matter how big or small.  For some reason, we have been blessed and spoiled to have so many of these people surrounding us!  It truly is amazing!   We are at a place in our lives, we didn't necessarily plan or expect to be in, and when you're having one of those bad days, its nice when something happens or someone does something to make us smile just when we need it.  Now there are a lot of people that I could specifically write about and I will eventually, I promise, because each and every person who has helped us on our journey deserves a shout out!

That being said, one of the things that I am passionate about with regards to my kids (and all kids) is being safe in a car.  So I am pretty anal about their carseats and having them strapped in properly.  I learned it all from my best friend Sarah's dad, Lew, who works with Safe Kids USA (greater Flint area).  If you have never checked out their website....do it!  If you have or know of a child who is in a carseat and have never had it checked by a safe kids technician....do it!!!  There are so many little things that can keep your child safe, that you may not be aware of.  They hold free carseat checks all over the country.  If you go to their website you can find an event near you.  They are trained to make sure the carseat is installed properly, as well as making sure that you have them strapped in properly. There are very simple things that can make a difference in your child's safety.   I think there are 2 things they do not educate you enough on when you're having a child....breastfeeding and carseat safety.  The carseat thing is much easier to understand and you will not lose any sleep from trying to do it. 😃Check them out please!   http://www.safekids.org/safety-basics/

So, I will get to my point!  The suggested age to change your child forward facing, is 2 or whatever the manufacturer recommends as a weight, on the carseat.  Well, with Patrick, we were not comfortable with moving him forward yet.  We also went to babies r us and put him in all the seats they had, and we just couldn't find one that we were comfortable with or it was only rear facing to 35 lbs, which he is approaching.  With Patrick's low muscle tone and low development, we really wanted to find him a rear facing that had a higher weight limit.  Sidebar....it was quite a sight seeing us put our child in every floor model of the carseats in the store(although I think Tim had fun).  It was quite a circus and we entertained a few passers by.  Needless to say we did some research online.  The other issue is just finding one that is good for children with disabilities or low tone, which is difficult.

Well, thanks to a donation and to Safe Kids of Greater Flint, we had a new Diono Radian RXT delivered and installed this weekend by Lew and his wonderful Safe Kids colleague Jami.  This carseat is awesome and rear faces up to 45 lbs, and will last Patrick many years.  It is like the Cadillac of carseats, and Patrick loves it!!!  Jami and Lew walked us through the features, the manual and installation.  Once Patrick got in that seat, he was in heaven!!  It was so cute.

We cannot even begin to say how thankful and lucky we are!  Patrick has this whole team of people taking care of him and no matter where we are, more people keep joining that team.  It's quite amazing!  Jami and Lew are great people and we cannot thank them enough, along with the people at Diono and their amazing carseats!!  These 2 took the time to come to our home and spend the afternoon showing us how to use the seat, install it and to just hang out with us and our kids.  They truly love their jobs and making sure that children are safe!  I want to be more like them....so much so that I really want to become a Safe Kids technician.  We shall see if I can make that happen in my spare time from eating Bon Bons and watching TLC.

We will definitely be paying it forward!!  For now, the one thing I can do is tell people to go to the Safe Kids website and find an event and get your carseat checked!!!!  It's easy and the people doing it are awesome and so helpful!  The other thing is to check out the line of Diono carseats!  They are amazing!  You can actually fit 3 of them in the backseat next to each other.  And based on Patricks reaction, they are super comfy!!  http://us.diono.com/en/car-seats/radian-rxt

Lew getting it ready

Checking the straps...notice Bubby admiring Lew :)

Jami giving Tim the rundown

Getting it in 

Happy 2013

Well I told you that 2012 basically stunk, with the exception of our little baby Jameson.  2013 is starting off much better!  My friend Sarah was able to get moved into a new place since the fire, although, not their permanent place, it is a nice home for now.  We also have a wonderful new edition to our family, Kelley Bernadette Wittschen Lynch, was born to Billy (Tim's cousin) and Bern.  She was born on 1-3-13.  We are sooooo excited to welcome her to the family and are incredibly happy for Billy and Bern, who are going to be awesome parents!!!  We can't wait to meet her and are trying to get a weekend trip planned out to DC very soon!!!  I am missing all of our DC peeps anyways...good excuse to go see them!

So next week starts all of our appointments and therapies again, so Tim and I thought it would be a good time to look for a house...sarcasm.  We are so excited to be closer to family and are truly grateful to everyone for helping us get to this point, especially my parents for letting us stay with them for a bit.  But we are itching to get back into our own place.  Someday when we are rich, we will pay my parents and everyone else back who has helped us!  We actually found a place last week and put an offer in, but since it was in 2012, we were outbid and didn't get it.  Now that it's a new year, I'm sure we will find something and things will go smoothly!!

Looking for a house is a lot different when you have a child with a disability.  We are trying to think of all the things that will actually save us time and money in the long run, and keep our little bubbs safe!!  Are there a lot of stairs?  Can we put a ramp outside if needed?  Will his little modified stroller fit through the doorway?  Does it have a stand up shower(which would be easier than a tub)?  If its 2 story, does it have a room on the first floor to change into a bedroom?  Will it fit our huge dining room table? Yes....I know it has nothing to do with bubby, but we love our table that fit in our last house and I need to find a home for it!!!

This is one of the many things that has made us realize how expensive it is to have a disability.  You don't realize it until you have to experience it first hand.  And Patrick isn't even that old yet, nor is does he have a huge amount of health problems, so we have been fortunate!  But everything from wheelchairs, modified strollers, modified beds, modified toys, modified cars and homes.  The expense is something that is just unreal.  Thank goodness we have a great support system, but not everyone is as lucky as us!

I know in a year from now, I will be lugging him up and down stairs, as a very heavy 3 year old and he will just get bigger from there.  We are trying to stick to ranch style homes for now, but are looking at 2 story if it is perfect otherwise and we can add on if needed.  But it will probably be a ranch.  I feel like we are at an advantage because we know what his capabilities could be, before we buy a house, so we can plan.  I know that it will get expensive to put an addition on, so if we can try to find something that works for all of our needs without having to do that.....that would be fantastic!!!!  So we shall see.

We love to take Avery with us to look for houses, she likes to pretend she is on house hunters (Tim and I are too mature to do that...wink wink).  We like to see how many times we can use the term,"this is a great space.". We like to pretend to run into each other in the kitchen or complain about the color of the paint on the walls.  I actually enjoy looking at houses.  Although it would be a lot more fun if they were in a bigger price range!

Here's to happy house hunting!!

It was an exhausting holiday season!

Still loving my new switch toy!

This hat is stupid!

Hanging out with cousin Jason:)

I added a link on the side that you can add your email address to.  It's suppose to send you an email automatically when I post.  We shall see if it works!!!

Merry Christmas

So it's been a while since my last post.  I have to be honest in saying that I didn't feel like blogging much after my last post.  Well, let me clarify, I didn't feel that our story was as big of a story as what was going on in Connecticut.  I will also be honest in saying, I have plenty I COULD blog about,with regard to that tragedy, but I will hold back(for now).  I will also say that our family was in the same boat as a lot of other people in this country, and that it knocked the wind out of us.

So now that we are all trying to make sense of it and move on, I think we all realize how grateful we are to have our families surrounding us this Christmas.  I will no longer complain about how exhausting the holidays were because we had to drive to a million houses to see people who love us.  We are fortunate to have all those people!!!  I have always said that I hate it when people complain about how they are constantly running after their kids, because I know any parent who has a child who can't, would give anything for that complaint.  So today, instead of freaking out because the living room is a mess of toys or wrapping paper, or my kids were cranky from all the noise and chaos, I know there are a lot of families out there who would give anything to have that back.  So I am thankful for my cranky, tired kids tonight and the mess that they were too tired to clean up:)

So Patrick is on a little holiday vacation from therapy.  We are still working on things with him, but it's nice to just let home have a small break too:). Last week he did some finger painting with his teacher, which he really enjoyed!  We also are waiting on a part for his motified stroller.  He has a base that stays in the house and we can transfer the seat into it, when we are inside.  It has what is called a high-low function, so it can adjust up and down to any size table, so he can sit with us. Sitting in this stroller gives him much more back support.  And it really includes him in whatever we are doing in the house, because I can wheel him around in it as well. So we are excited to get the part that was broken when they shipped it.  I really want to start using it:)

So when the new year starts we will be busy with his appointments.  He will be seeing his pediatrician, sports medicine(to possibly start therapy at Uof M in addition to his home therapy), he will be getting orthotic braces for his ankles so that he can start to put more weight on his feet and legs, ears and eyes check up, cardiology follow up and a kidney ultrasound follow up.  The kidney and heart are just to monitor.  He hasn't seen them since he was 1.   So they want a follow up.  I am sure we will probably see a neurologist as well.  Busy, busy:).  He is doing well overall though.  He is starting to reach further and further for toys and is also trying to grap the spoon or fork when we feed him:). These little things make us smile!!  Oh, and he got his first switch toy from Aunt Laura(thank you;)). He loves its.  If you don't know, they are toys that have a mechanism that allows something to move or play music from a small touch.  It's basically a cause and effect toy.  It teaches him that he can make things work:)

I just want to say how thankful we are for all the people following us!  We have 29 official followers.  Our goal in this is just to bring awareness to PKS.  Of course I will throw in other things, but we really want PKS to have more recognition.  Don't forget to ask questions....I won't bite!  We have also had over 1700 views.  Tell your friends too!!  I also tried to set up a way to automatically send you an email when I blog, but I don't see it anywhere.  If you know how to do this, please email me:)

I hope you all had a great Christmas  and I promise I will write more!!  xoxo

Advantage to PKS?

So this year has been by far one of the most trying on our family and friends for several reasons.  We have endured financial issues, moving, family members becoming ill, children becoming sick, children passing away, friends diagnosed with cancer, among others.  This week my best friend Sarah and her family had a house fire and are currently living with her parents.  Now they are all safe, including their animals, thanks to her daughter Madison.  This is a HUGE reminder to teach your kids what to do in an emergency.  She did everything she should have!!!  So proud of her and Sarah!!!  It's a crazy thing when something like this happens and you realize how many things you rely on.  If you would like to help this amazing family, send me a private message on Facebook or text me. every little bit helps!  Love them:)

So today I was feeling sad just trying to figure out how to help Sarah and then having to take care of some things with Patrick.  I was making some phone calls and getting treated crappy by stupid people...what can ya do, right?  Minor problems it seems now.   Then our world stopped again when I turned the news on.  The pain that these people are going through is unimaginable!  All I could think of is that I wanted to go pick up Avery and bring her home.  Then my second thought was imagining myself on a Friday morning for the last 4 years teaching at Lane.  Teachers and students walking around the building, chatting in the office or hallway, kids going to the library in pairs, just the excitement that it's Friday (and only a week from break).  It made me think of all of my school friends and all the other schools around the country.  I can just picture what was going on in that building today.  Teachers doing their thing, kids doing theirs.  The thought of those precious young kids, so innocent, just doing morning work or circle time and not knowing how vicious and selfish and sick some people in the world are.  How their teachers were doing everything they could to keep them safe.

So as I was watching all of this, I looked over at Patrick and he was laying on the floor, I was trying to get him to nap.  But he was rolling back and forth on the floor shaking his head cracking up laughing at the ceiling fan.  He was having his own little party on the floor.  Those are the moments I love!!!  When he is laughing:). I was also thankful.  Thankful for a lot of things at that moment, but one was that even though I wish he didn't have PKS, I am thankful that he won't have to experience the emotional pain we are all experiencing right now.  He will never have to wonder why people are crazy or why house fires happen or why little kids die.  He is perfectly happy with rolling on the floor and laughing at fans.  And today, I am perfectly happy with that......

Thankful for them