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

Busy, Busy, Busy

It seems like an eternity since I last wrote...but it's just been a few days.  I took some much needed me time this weekend to celebrate my sister turning the big 3-0 on Christmas (old lady). Haven't celebrated with everyone yet though;). It was nice, but back to the grind yesterday and today.  

I swear I thought my life would be less busy without teaching...I was wrong!!! I have spent more time on the phone dealing with insurance issues, scheduling appts., dealing with equipment for Patrick that breaks or needs replaced, etc. etc.  but I have managed to get the boys on a schedule with what I like to call rotations.  I don't like Patrick to be in any one spot for more then 30-40 minutes.  So I like to rotate him to different activities though out the day.  What can I say, it's the teacher in me:).  So Jameson has fallen victim to this as well.  They usually start with easy things, first thing in the morning.  They LOVE to watch Sprout.  If you're not familiar with it, it's a channel that shows kids shows all day, but they sing songs, have a theme for the week, go over what day it is.  It's very similar to circle time at school.

While they watch that, they are usually sitting up on the floor and have toys in front of them to play with.  For Patrick, I make sure it is the 2 or 3 toys that he enjoys and can pick up on his own, specifically his octopus that April got for him:)). After that, I rotate them in between the jumper, tummy time, just playing on their backs, naps and eating.  Which I won't bore you with specifics of the whole day.  

On Tuesday's and Wednesday's we have visits from Patrick's PT or OT and his teacher.  Starting in January he will be going to class on Thursday afternoons as well.  I will go with him.  I am really looking forward to it:). Today was OT and we spent the time working on everything with him!!!  We started with a massage and working on his muscles to loosen him up, which he LOVES...spoiled boy:). Then we played with some new toys to try and get him to touch them.  We always use things that will play music or light up when touching, so he gets some feedback from what he's doing.  Today he was totally loving this John deer tractor toy.  It had the steering panel on it.  He loved putting in reverse and hearing the beep, beep, beep.  It was the cutest thing!!

Tim wears this same outfit when he drives a John deer tractor too...

After that we did some work on grasping toys.  Then we moved into some side sitting and tummy time.  He used to hate tummy time, but has become much more tolerant of it!  He is able to put weight on his arms for much longer then he used to.  Which I can thank the iPad (and his therapists) for, because we use it to motivate him while he is on his belly.  Which I can thank my cousin, Jason for, since he was the anonymous donor of that.  Oops:). It has been the most valuable gift for him.  It brings him such joy and helps him in so many ways.  I can't thank him enough:)

So tomorrow will be a visit from his teacher.  But overall, everyone is really happy with his progress, especially me:). I am attaching a picture of Jameson and Patrick playing on the floor today.  It was so cute!  Now little Jameson is getting his 3rd and 4th teeth.  His first 2 were on the bottom middle and you would think that his next 2 would be on the top middle, but no...not Jameson.  His next 2 are his fangs.  So he will have 2 on the bottom and his 2 fangs on the top.  Hopefully I can get a picture when they fully pop through.  This child cracks me up!

I am going to post my entries on Facebook for a while.  I know some of you want to have an email when I post, which I don't blame you, I just haven't had time to play with it yet and neither has Tim.  I will remind him to look at it.  Also he will be writing very soon.  His new job is keeping him busy, on top of his family life:). Oh...and little miss Avery would like to write one as well, so stay tuned for that.  

I also wanted to let you know that if you have any questions that your curious about with Patrick, PKS, our family, etc, just ask.  You can write a comment on here, on Facebook or private message me on Facebook as well.  I am happy to answer any question!!!  I mean it:)

Jameson is considering taking him out for that toy.

Other facts and things

Well I didn't make my goal of writing everyday.  Last night we were celebrating my brother Patrick's birthday, so we didn't get home until late.  Well worth it, so I shall see if I can crank out 2 today and then I will take the weekend off:)

So I realized that one of the things I haven't specifically talked about with PKS is how they diagnose it.  In Patrick's case, his showed up on the blood test that looked at his chromosomes.  But not all cases can be diagnosed that way.  Some of the kids needed a skin biopsy to confirm a diagnosis.  The reason why the skin biopsy is used is because the cells in your blood can quickly regenerate, so after a few days the mosaic cells will leave the bloodstream, which can give a false negative.  The reason why our geneticist ordered the bloodwork first, was she was fairly confident it would show up in Patrick's blood, but if it didn't, the skin biopsy was the next step.  So it's highly encouraged to get a skin biopsy if PKS is suspected.  Even if the child has had the bloodwork!  

There are only around 200 confirmed cases in the world, but they believe it is very under diagnosed.  This was something our geneticist told us during our first visit.  She had experienced cases diagnosed later in life.  Early intervention for these kids is so crucial for life skills and health management. It is so important for parents to advocate for their children if they feel something is wrong.  Their is nothing stronger then a mothers instinct.  That goes for things other than PKS too :).   Keep fighting until you know!!

So I thought I would just post a couple pictures of Patrick's progress over the past 2 years.  Then I have to get back to these 2 crazy boys.  This is the point of the day when they are both happy at the same time:)  Oh and don't think we have forgotten...Tim will be writing soon.  Poor fella has been working a lot.

And the last picture is not a milestone either...just his first time being a pirate.  He really enjoyed it!  I can't write a caption because my iPad is not letting me scroll down all of a sudden.  Technology=1, Me=0.

Right around 9mo

Day he was diagnosed. March 31, 2011

Sitting up.  April 2011 10 months

First time holding his bottle.  In therapy May 2011 11 months 

First time holding a sippy cup with handles.  July 2011. 13 months

IEP and TMK

So today was Patrick's IEP for the Early On program that he is in.  For those of you not familiar with what that is, I will give you a quick summary.  It is an Individualized Education Program.  Basically this is a legal document stating what special services your child should receive and why.  It's tailored for your child's individual needs.  So therapists, teachers, etc, evaluate the child and come together with the parents to design a plan based on your child's strengths and weaknesses.  As a team you discuss what are some of the things that you would like to see the child doing in a given time and set goals.  That is a VERY brief summary of what happens.  These meetings can sometimes be short, but a lot of the time can be lengthy due to everyone discussing the child's needs.

This can sometimes be a stressful event for parents.  Making sure your voice is heard and speaking up for what's best for your child.  For me, these meetings always left me sad afterwards.  Not because of the people doing them with me, they were always great.  But because it's hard to sit and listen to all the things that Patrick isn't doing, or what age level he is currently at with his motor skills, simple things that most of us take for granted.  For example, one of his goals is holding a toy for 30-45 seconds.  Such a simple task for us, but yet those are the things that a lot of parents have to work on with their children.  It can become overwhelming to sit and talk about all those things and then to look at him and his sweet little face and realize he just doesn't know any different.  It would sometimes make me feel down afterwards.  But it's getting a little easier each time, because we are seeing progress in him, because of all of these wonderful people.  So today, I actually felt pretty good afterwards.  

Another aspect of the IEP process that I learned a lot from, was seeing things from the other side of the table.  I was always on the teachers side, as a general Ed. teacher, but now I had a new understanding for the parents sitting across from me.  Not that I didn't try to understand them before, but now, I truly knew how they felt.  That is invaluable!

So on those nights after the IEP's, or therapies, or appointments when I just had a hard time, when my heart just kind of ached for Patrick, there was a HUGE support system around us that we could turn to.  But the one who understood me the most was Tim.  He is by far my rock and the one who balances me out.  I am the one who worries, he is the one who assures me.  I am the one who can be irrational, he is the one....dare I say....that can be rational (although I am sure there are a few college buddies that might beg to differ).  But let me also point out that this is for situations regarding our family....at no point when I mention his good points does it have anything to do with his handling of:  the Tigers, Pistons, Red Wings, sports in general, concerts, political conversations, anything that happened in Kalamazoo from 2001-2006, Tom Hanks Day in the back of a Chicago cab, etc. etc....

I have to say that having a child with a disability, illness, etc. it is so vital to have a support system, which we got lucky with that one!  We truly have amazing people surrounding us and we will talk about all of them on here.  But the most important to Tim and I are each other.  When Patrick was first diagnosed, I remember crying to Tim in the car.  All I saw for Patrick were the worst case scenarios, a lifetime of doctors appointments, IEP's, never fitting in, getting stares from strangers, not knowing if he would walk or talk or do anything.  But Tim was so calm and just said, "Annie, he is going to have a great life, because we will make sure of it.  He will be happy and he will never know any different."   He was so right!  All we cared about was at the end of the day, was he happy today?  Did we make him smile?  That's it.  

So on those days when I am having a hard time, and when I say that, I mean days when I see a kid Patrick's age running through the store or talking to their mom, and I wish Patrick could do it, Tim is the one who turns me around.  He is the one who says, he is just as happy as those kids, watching his iPad or just laughing in his stroller at something and we have no clue what it is.  He is a happy kid.  

I am so incredibly grateful for an amazing husband, who always puts my needs first, always tries to take the stresses of life off of me, keeps being nice to me when I am being stubborn or incredibly crabby(and if you know me well enough, that is a tough job).  With all the great things he does for me, it truly shows our kids how a husband should treat a wife.  He is an amazing father who is adored by all 3 of his kids.  I actually joke with him that Avery likes him more(which I am perfectly ok with).

People ask me often why we didn't start dating sooner, to which I say I was way to cool for him.  But seriously, timing is everything and neither one of us would change that.  It's made us who we are today and I am so grateful for the man, father and husband he is!!  I am truly lucky to have him to share this journey with!!

Ok, Ok....enough of the mushy stuff...he's not that perfect....he wears his work socks with basketball shorts, he wears the socks they give you in the hospital out in public, he won't get rid of any of his tshirts, he snores, and he doesnt like cheese(weirdo).  I heart you TMK!!

So I vowed to write everyday this week for PKS awareness week, so I will!!  After Friday, I will probably do a couple times a week.  Thanks so much for all of your support and keep sharing our blog.  Our goal is to make PKS as well known as possible!!!

Happy PKS Awareness Day....Thank You!

Bubby would like to say Thank You to everyone for their support on this special day!!!  Whether you just took the time to read our blog, read something new on the pkskids website, shared information or did something to bring awareness....Thank You!!!  It's all for him and his friends!!

So tonight I would also like to take the time to thank all the wonderful people who have helped Patrick over the past 2 1/2 years with his medical care and therapy!  We have truly been fortunate with the people who are helping him!!  

Just to give you a quick overview, most kids with PKS are in some sort of therapies.  Each of their delays are different so their needs are as well.  Most of them receive a mixture of physical, occupational, speech and vision.  Some may get all of them, some may have one or two.  The frequency will depend on their needs as well, once a day, once a week, etc.  Some get these services at home, some at offices and if they are school aged, in school. The same goes for doctors appointments.  They all see a range of specialists, from cardiologists, neurologists, etc.  having these services in place as early as possible is so important for these kids.   Getting them to learn something as basic as holding a toy for longer then 30 seconds can take them quite a while.  For instance, Patrick could hold a bottle at a year, but he is just now picking up certain toys and bringing them to his mouth.  But thats because of his therapy and repetition, repetition, repetition.  

So as most of you know, we moved back to Michigan from Virginia a few months ago and it was one of the most difficult decisions we had to make.  We had established our lives there and made so many friends that are now part of our family(which I will discuss later because they deserve their own blog).  But one of the scariest things was re-establishing everything we had in place for Patrick.  The time we put into it, getting him comfortable with the people who work with him and going through the whole process of IEP's, early intervention and the list goes on.  But at the end of the day, it was something that we couldn't control and we had to move.  So we had to say good bye to our favorite therapist, Ms. Brenda and our favorite coordinator Ms. Sue.  These 2 women really got us set up with all the things that we didn't realize we needed for Patrick.  When you have a child with a disability, it is overwhelming trying to figure out what the resources are out there and how you get them.  These two took Tim and I under their wings and just helped us with everything we needed!  

Patrick in his stander for the first time with Ms. Brenda.  Tim wasn't too excited about it, he thought it looked like the thing they used to transfer Hannibal Lector in Silence of the Lambs.  Bubby liked it:)

Now Ms. Brenda was just perfect for Patrick!!  She was so patient and calm and learned his personality so quickly.  Let's face it, Patrick is his fathers child.  He has that Irish, Tim Kelley temper.  If Patrick was able to, he would throw chairs off balconies after watching Tigers games, just like his daddy.  So maybe I should make that his goal on his next IEP.  So anyways, Ms. Brenda knew when to push him and when he was done, without me saying a word.  She could get him to do things that Tim and I couldn't.  She was great.  For her, we are truly grateful! Thank you Ms. Brenda!

Moving back here has turned out to be great for Bubby.  Patrick is now getting into a new routine with his therapists here.  He is really enjoying his teacher Ms. Carly, who is very sweet and sings songs with him, which he LOVES!!  She comes once a week and then we will start going to class with her once a week in January.  He has physical and occupational therapy alternating every week.  Ms. Stacy and Ms. Karen have been awesome as well.

We have been over the moon happy with the healthcare he has recieved from the University of Michigan...go blue!!  They are so efficient!!  But the biggest shout out for them, has to be that every doctor we have seen has had the best bedside manner with Patrick, which lets face it, we don't see everyday.  He saw the head of genetics in Ann Arbor a few weeks ago and he was tickling Patrick and playing with him.  We were amazed.  

One of the worst feelings in the world is leaving an appointment and feeling like the doctor didn't have time for you or that he has a disability, so there's not much they can do.  I have had this happen.  Then there's the very common occurrence of having to educate the doctor on his disorder.  I walk in with my bubby binder full of his medical records and have to explain what it is.   THIS IS WHY ALL THESE PARENTS ARE WORKING SO HARD TO BRING AWARENESS TO PKS!!!!!  When there isn't even enough information for doctors, then we need to do something!!

This is where I thank CHoP-Children's Hospital of Philadelphia, who takes the lead on research.  They are doing great things and are publishing articles in the American Journal of Medical Genetics for December on PKS,  This is exciting!!!  Huge thanks to them!!!  Here is the link to pkskids if you would like to read them:

http://www.pkskids.net/medicalresearchinfo.php

It takes a lot of people to help raise our little PKS kiddos and these people are amazing at what they do!!  We are truly thankful for having them to help Patrick learn the basic things he needs in life and keep him healthy.  And they are only part of the puzzle....

With that I'm pooped!  PKS day was exhausting!  Nighty Night:)

How did that happen?

First off I have to say WOW!! We feel the love!  In less than 24 hours we had over 450 views in 5 different countries.  This is amazing!!  So thank you.  Although we are new to blogging, so that could be a low number in the blogging world, so if that's the case, we need to annoy people more:).  Keep on spreading the word!

Tim and I get asked questions quite often about PKS.  Which we have to say that we actually enjoy answering.  We are not at all offended when people come up and ask questions, which is what most of our PKS families would say.  We would much rather have you come up and ask, then to just sit and stare.  We love to tell people about it!!  So ask away:)

One of the things we get asked a lot is how PKS happens.  Well this is another teachable moment (which I will take advantage of because I do miss it:)).  You will get the 6th grade version.  PKS (based on the information today), is a random event that happens during cell formation.  Basically we tell people that when the cells were all dividing, for some reason chromosome 12 decided to pick up 2 extra parts.  And since we have these cells and chromosomes throughout our bodies, some of the cells have the extra parts and some don't.  This is called mosaicism.  So each person with PKS can have a different amount of these cells in their body.  These cells with the extra chromosome is what disrupts the development.  Hopefully I didn't confuse you too much.  One thing Tim and I have in common, is that we tend to be nerds and find this sort of thing interesting.  Genetics is complicated.  We had genetic counseling after he was diagnosed, but we also find it interesting just to learn about genetics.

Now the one thing we were also asked is whether we would have more kids after Patrick and the answer has always been yes (when the timing was right)!!!  PKS is not inherited.  Which means they do not believe it is passed through families.  It is genetic and random.  Yes...genetic is different than inherited.  Too tired to get into that too much tonight.  But hey...you learned something new:) we were told that having a child with PKS was rare, but to have 2 was even more rare, because based on what our geneticist told us, there are no cases of families with 2 PKS children.

Now...back to having more kids...yes...we wanted more and if it was up to Tim we would have 20.  But he doesn't have a uterus so let's face it, it's not up to him.  Just kidding.  We both wanted a lot of kids, but having a child with a disability can change things a little.  Not in a bad way, just in the way that it's suppose to be.  So we decided we would wait a while to have more.........we all know how well that turned out.  Little Jameson had other plans, which we are incredibly grateful for!!!  I will post about Jameson and Avery separately.  So they can have their own spotlight.  So stay tuned....

In case you're wondering what I do all day....

Laundry baskets that never empty, my little Jameson doing what he does best and Bubby doing his own thing:)

Also stay tuned for the one and only Timothy Kelley, who will be writing his own blog this week.  Woo hoo...can't wait:)

www.pkskids.net

Here we go....

So here we are.  Finally.  I have wanted to start this blog since Patrick was diagnosed, but time was never my friend.  So since Tuesday is PKS awareness day, I said I am done with excuses!!  This is one way of spreading the word about this disorder and all of the amazing PKS kiddos that Patrick shares this with.  

Now first of all...no judging on my grammar, spelling, etc.  Yes I am technically a teacher (on a little vacation at the moment), but I have 2 excuses:  1.  Exhaustion, as I will be writing this at midnight most nights when it's quiet and I have my free time to reflect on my crazy days.  2.  Autocorrect-we have a love/hate relationship!

Tuesday is 12-4, which was chosen to be the date of PKS awareness day, because of the 2 extra parts of the 12th chromosome.  So they have 4 parts of chromosome 12.  Recap: you are suppose to have 2 and they have 4.  No pop quizzes on genetics tomorrow.

People with PKS have a wide range of health issues as well as global delays.  Each person can have a different variation of these.  Patrick has been blessed health wise so far, but is severely delayed cognitively and developmentally, and very low muscle tone.  But some kids have had numerous surgeries on a various number of things, such as heart defects, cleft pallets, hernias and many others.  Seizures are very common as well, but again, Patrick isn't showing signs yet, but we are keeping an eye out, because they can develop later. 

Patrick was diagnosed on March 31, 2011, when he was around 10 months.  We started to notice that he wasn't making some milestones around 5-6 months.  He started out with early intervention services and then a few months later our pediatrician recommended seeing a geneticist, because of some facial features that were beginning to become more prevalent(wide nose bridge, sparse hair growth and just "a look" in general).  When we walked into the geneticists office, she knew right away what he had(yes, she was that good!).  And the blood test confirmed it a week later.  It was a blurr for us for a while.  Just going through the motions and trying to figure out what we are going to do next.  But part of me was actually relieved.  We spent months knowing something wasn't quite right and you would get a lot of people saying he was fine, because all kids learn differently.  But that motherly instinct kicks in, because I just knew.  So before we left the office that day, I told the doctor that I needed some sort of resource to study up on this or I was going to go home and google it(and we all know how well that would turn out). I would find the worst case scenario and that would be it.  Luckily she gave me the PKSkids website(which I have a link to on here) www.pkskids.net.  Let me tell you, this website is amazing!!!  It is run by parents and they have a link for us to communicate with each other on issues and share ideas and stories.  Now I probably don't get on there enough, but these parents on here are just superior!!!  They all have such dedication to their children's success and well being!  I have learned so much just from reading their posts and stories. We also had the opportunity to meet some of them this past summer and they are all just great people!  These parents are the ones advocating for their kids and this disorder to raise awareness and get these kids the resources they need to succeed.  They have motivated me to try and do more!!  Hence the reason you are all subjected to reading this!  So anyways, the website is not just for parents, it is also to spread the word on PKS, so go there and educate yourself on it....because you never know when I will give you a pop quiz:). There is also a link for donations, which are tax deductible, and a PKS store, which has lots of cool stuff to buy.  So you know how you wander around a store trying to think of something to buy someone for Christmas....you will no longer have to do that.  Get those 30 minutes of your life back and buy something PKS.  It's for a good cause......research, to help families, our medical conference and to start a medical registry.

Now my plan is to write as often as possible.  I can't fill you in on every aspect of everything tonight...that wouldn't be any fun!  I will mostly focus on Patrick's progress and then talk about the rest of our crazy family.  So my family and friends beware!!!  I have always said we would get awesome ratings if we had a reality show...we are that crazy.  But seriously, we have an amazing support system and Patrick was definitely put in this family for a reason!!!  We learn way more from him then he learns from us!!  He is an amazing little boy, as you will come to see.

Oh....I have to give a shout out to our good friend Andrea, who gave me the name of the blog😉. Patricks nickname is bubby.  It's kind of weird saying Patrick, since we use bubby so much!