Picture taken by the lovely Janel Johnson at Janel Johnson Photography

Friday, August 24, 2012

Epic Fail

That is what I call my blogging...........

I am determined to get back on track with this!  The past 6 months has been so busy.  I truly mean this........insane.......crazy........ridiculous.....busy!  We have had so many changes in our lives.  It's hard to know where to start, but I have come up with a plan ;)

I am going to recap my last 6 months in the next week by doing a piece on each month I have missed since Feb. 2012.

Shame on you Jenn!

Wednesday, February 29, 2012

Just Say It Out Loud Already!

I have decided to do this post - just so I can vent some of my frustration about this particular subject.  So here it goes............

I wish someone would just say out loud .....to me......."Jenn, Joe has cerebral palsy."  NO ONE HAS SAID IT TO ME!  I mean........I am aware he does and Joe's therapy ladies and I have talked about it.  It just annoys me that I take him to the Dr.'s and we do all this CP related treatment stuff, but no one has ever looked at me and said that he has CP.  Why? 

It's not that I want Joe to be labeled, besides it's not a label it's just a part of who he is.  That's not a bad thing - no I'm not like happy he has CP - no one wants that for their child.   I am not going to view it negatively though.  I refuse too.  We, as in our family and Joe, will carry on living a normal and happy life. We will do whatever we need to do for him.  He will never be treated any different than anyone else in this family.

I just feel like no one wants to be the one who diagnoses him or tells me he has CP.  Maybe they all assume I already know?  I just want a Dr. to tell me that Joe has CP and these are the things we are going to do to help him along the way.  In fact, Joe's OT is having problems with my health insurance because on the billing he is diagnosed as developmentally delayed.  Which is a common diagnoses in the beginning for preemie babies.  They need a reason to have therapy in order for insurance to cover the sessions.  They are starting to not want to pay because it's like how long is he going to be developmentally delayed??  They want a diagnoses .......... a reason little Joe has therapy!  We actually have to call the Dr.'s office and ask them to diagnose him so insurance doesn't have a problem covering the sessions.

I don't want this for Joe, like I said previously.  No one would, but it is what it is - so lets own up to it and lets move forward with it.  It's going to be fine - this does not define Joe, it's a part of him, but not his definition!  It's not his label or our family's label.

So here I am saying it out loud............

Joe has cerebral palsy.

Tuesday, February 28, 2012

Joe's 6 Month Review Part 2

Okay, to say I am a little behind on the blogging about Joe's 6 month review is an understatement. 

PT -  As far as physical therapy goes, Kim and I had a goal that Joe would pull himself up to stand and scoot along furniture.  Well ....Joe isn't doing that, but his standing has improved a ton!  We still help him stand against furniture (he can't pull himself up to stand) and he seems to enjoy it.  We use the ottoman in the living room - then we can put toys on it and he plays with them well he stands.  It is almost like he forgets he is standing because he is having so much fun and can do it for a long time, it's just getting there that hasn't clicked :)   His sitting up is what has improved the most.  He can pretty much sit up by himself for a good 10 minutes.  He even catches himself when he starts to tip.  Joe's problem with sitting is he doesn't put himself into that sitting position we have to set him into it.  I believe he could do it, but it doesn't come natural to him.  It's like me just suddenly writing with my left hand - it doesn't happen it's not automatic to me.  My goal is to encourage him so it becomes natural.  Working on him with it over and over and over, until he just one day pulls himself up to sit up.  He can play and watch TV laying on his belly, so that is what he does.  If we put him into sitting he will sit and do it - he just doesn't think to do it.  We also have a little walker for Joe.  In this walker he can turn a complete circle and move around.  When he gets tired he can stop and hang in his chair part.  It also has bars all around the side so he can hold on.  He is a bit short right now to reach the handles and hold on when he walks, but he likes to chew on them.  Walking is still very new to him so he doesn't really understand the concept yet, but he goes backwards.  He knows if he push his feet against the ground and springs them back up it will send him backwards until he hits a wall and can't move back anymore.  Then Mom needs to come and push him away so he can start over. Our new goals for the next 6 months is pretty much the same, we just added taking steps into it.  Not walking alone, but taking steps when we are holding on to him. We want him to learn to put one foot in front of the other.  Kim started doing that and it actual made us a bit emotional because that foot in front of the other is a natural reaction in our brain, but because of Joe's injury it's not natural he has to develop a pathway in his brain to create that movement naturally.  Sorry got side tracked..........it made us emotional because he started doing it put one foot in front of the other and he was doing it with his right leg.  The right side of his body is the side that doesn't work well.  It was a huge deal to us :)

OT - Occupational therapy is Joe's best of the three therapies.  He really excels at it.  Sarah works on things like stacking blocks, pulling apart stuff and putting it back together, puzzles, feeding himself, sitting, crawling on all fours, drawing, rolling the ball back and fourth, and eating-chewing food.  Joe loves to play with her toys.  He likes to mimic what Sarah tells him to do.  Like.... put the pegs on the peg board,  draw on the magnadoodle, scooping stuff and transferring it from one bucket to the next, and stacking blocks and cones.  The determined look on his face is priceless.  He loves to do stuff like that and he gets it......he is good at it.  That makes my heart melt because he understands commands.  He watches you do something and then he knows how to do it.  That is big to me.  I feel like his cognitive stuff is well then.  He reminds me so much of his Dad in that way - when he wants to do something he wants to do it - he won't stop until he does it.  Even if it doesn't work out the first time.  He isn't lazy - he just keeps going and going.  When he knows how to do something or figures it out he just wants to keep doing it - it almost looks like he is trying to perfect himself.  I wish I was more like that in my life!  He has my good looks and Raymond's determination I guess.....LOL....just kidding!  I like to say that because he looks exactly like his father - but he had to of inherited all my good qualities too right?  Our new goal for this next 6 months with OT is that Joe will eat with his cute cute little fork and spoon.  I think I need to post a picture of them!  Right now he feeds himself - with his hands.  Which is a HUGE improvement and we basically met that goal from last time's goals.  He also drinks all by himself with his sippy cups. 

Speech - This is Joe's hardest one.  The worst injury in his brain occurred in the speech part.  He has made progress though.  Amanda is doing an excellent job with him.  I do not get to see therapy much with Amanda because she goes to daycare for his sessions, but she leaves me notes about what they have done.  I can tell she is working with him because his talking and hand - eye coordination is improving.  Honestly, I can't remember the goals we made because 6 months ago I had only suggested to start speech so we did.  I didn't really know where we were at.  I wish I would of suggested it sooner because it's going to be his biggest struggle, but I didn't know.  I didn't even really notice his talking skills either because he is my first baby ever and he said Mama so I didn't really care ........ just kidding again.  Truthfully, I knew he was behind, but thought it was fine because he was expected to be from the extreme preemie baby thing.  His communication has improved but he only says between 4-6 words.  They include:  Mama, Dada, Yeah, Yumm, Mmmm, Eat or "E", and he is recently saying "Blue" he loves that crazy dog on Blue's Clues.  Just yesterday he was saying "No" so maybe another new word?  Amanda and I have discussed getting Mr. Joe an IPad.  IPad's can do amazing things for kids that can't communicate well.  They have apps you download and you can put anything on there.  Joe can go to it and show me what he wants or is trying to say.  It can be as complex or simple as you want it to be.  It becomes more complex the older he gets.  The same as speaking - the older a child is the more they discuss and request from you.  An example is the IPad can have a picture of "playing" or "sleeping" Joe will point to which he wants.  Or eat - bath - play - sleep - read - etc.  Then he picks what he wants and we can elaborate off of it.  Okay you want to eat - what do you want to eat?  Then pictures of foods Joe likes will come up and he can point to them.  The older he gets the more complex his options and discussions will become.  Right now we wanted to set a goal or giving Joe decisions and work on pointing with his finger.  Once he gets that down - we can look into the IPad more seriously.  Maybe by then Blue Cross Blue Sheild will realize it's a medical necessity and pay for it too :)  I am greedy!  Raymond's Mom - Joe's Grandma is such a wonderful loving person and offered to help pay for one too when the time comes.  What an amazing gift!  She is such an incredible Mom and Grandma and we feel blessed she is in our lives!

On another note - Joe is now crying when all his therapy girlfriends leave.  He has really grown attached the them.  I don't blame him they are amazing!  It's sweet that he hates to see them go! 

   

Friday, February 17, 2012

Robots for Blake

I designed a new blog site just for Blake - robots galore.  I couldn't resist.  I have a big post almost complete about Joe's 6 month review.  You know - the one I promised like a month ago???   And I have lots more to say, so I best get my butt in gear on this robot love page I've created.

Stay tuned - until then enjoy the busy robot madness!

Wednesday, January 18, 2012

Ice-Cream for Jenn.... yes please!

So I literally just discovered like 5 minutes ago that July is National Ice Cream Month. 

Why am I blogging about this you ask??  Well it's no secret at my house that Jenn LOVES ice-creams.  In all shapes and forms. Scoops in a bowl, cones, sandwiches, mcflurries, dilly bars, all flavors, toppings.........love!  I am always teased by Raymond about where all ice-cream disappeared too?  Or he brings home ice-creams and tells me I am not allowed to have any!  I will literally eat all of it in a matter of days and I am not ashamed to say it - unless I am lying to Raymond about being the one who polished it all off.  It's funny when Raymond goes to get himself a creamy delightful treat only to discover there is nothing in the freezer.  I know it's gone, but I do not try to stop him from checking.  He will then ask me, "Jenn did you eat all the ice-cream?"  and I will flat out lie, "No - I don't think I ate all of the ice-cream."  I am a terrible liar that is why it is very out of character for me to be dishonest, but we will both start laughing at my harmless dishonest answer because it's so ridiculous and childish that I even try.......    :)

Not only did I discover that July is National Ice Cream Month ................. I discovered some very wonderful facts in relation to this fantastic idea of a month.  It was declared National Ice Month in July (the month I was born) 1984 (the year I was born) by President Reagan.  The third Sunday of July is National Ice Cream Day and my birthday is the 16th.  That has to be close to the third Sunday every year right?  Is this a coincidence?  I think not!!!  I think discovering this explains a lot and I should probably continue to eat as much ice-cream as I need too because this month was made for me! 

Joe's 6 Month Review - Part 1

The other night all of Joe's girlfriend came to the house to do his 6th month therapy review.  By girlfriends - I mean Sarah his occupational therapist, Kim his physical therapist, Amanda his speech therapist (she was not there but was in spirit), and Jennifer our Birth to 3 case manager.  Birth to 3 is a program in SD that is FANTASTIC!  I have nothing but wonderful things to say about it and honestly it makes me love living here. This state provides such an incredible program and I would never move because I want Joe to have these ladies in his life.  Birth to 3 is basically what it says - children from the ages birth to 3 years old that have special therapy needs are eligible for this program.  You coordinate with your case manager the types of services your child will need and how extensive the therapy will be.  After that is determined they contact the therapist the state has a contract with (at least I think they have a contract or get referrals? Something like that.....) and set up at home therapy sessions.  Each one of Joe's therapist owns a therapy business and travels around doing in home therapy for children.  They come to your house or they will go to daycare whichever works out best.  They are wonderful!  They are wonderful people but most importantly wonderful therapists.  Raymond and I love them and so does Joe ;)  When I moved here I had a bad experience with therapy in ND and I was really not sure about using any therapy services here.  I was thinking I should just take Joe to the hospital weekly to work with therapist.  Kim and Sarah completely worked around my schedule and they come at 6pm so I can be there to do therapy with Joe.  I do not have to miss out on it or take time off of work.   Kim (PT) and Sarah (OT) have been working with Joe for just about 2 yrs.  Amanda started her services this past July 2011 when I noticed that Joe isn't talking.  Amanda didn't have any evenings available, but she sees Joe in daycare.  We communicate well and often so that makes it nice. I always feel in the loop.  These ladies and I communicate about Joe AND everything else in between!  I have became good friends with them. In fact, Raymond told me - in a nice way - I need to shut up when they are trying to work with Joe because I probably drive them nuts.  Hehe - I don't though Raymond is wrong.  Joe also has an awesome daycare provider, Kathy,  that works on the therapy with him.  Jennifer our case manager coorindates everything - making sure that Joe is getting all the services I think he needs.  She keeps track of our goals and outcomes.  We meet up every 6 months with the therapists to discuss those things.  I can email or call her anytime with questions or concerns.  The best part about this program is it doesn't cost us one cent!  They bill insurance and whatever insurance doesn't pay for the program picks up the tab.  They also accept medical assistance and pick up the tab if assistance doesn't cover the entire bill.  If you have nothing - no insurances - no medical assistance they pay for the entire thing.  It's truly important to the state that children get the therapy they need and they do not want people to skip out on it because they cannot afford it.  It's great to live in a state that cares about children that much! 

Since I don't want to make this post too long I will elaborate on what we discussed during the meeting later on this week.  Lots of good things and lots of goals for little Joe :)  

Monday, January 9, 2012

Jenn the Tree Hugger

That title has a funny ring to it huh?  I never thought I would say that about myself.  I never use to be "thrifty" or "environmentally friendly" in fact, I was more like the high maintenance wasteful type. 

Thanks to pinterest and Raymond and I's ambition to save more money I have became rather thrifty and crafty. 

My first thrifty act was making our own laundry detergent.  Not only am I saving tons of money I get a lot of enjoyment out of telling people I make our laundry soap.  I am dorky like that.  With my new recipe I am spending about one cent per load.  I love the stuff too.  At first I thought maybe I loved it because I made it and not because it works awesome.  It isn't like this super awesome detergent by any means, but Raymond and I see no difference from the store bought soap.  Our clothes smell and look clean.  That is enough to make me love it - one penny and I see no difference from the $12-$20 2 gallon bottles at Walmart. Fantastic!

While I was making our laundry soap I decided I wanted to try and make more stuff.  I also discovered that vinegar is pretty awesome stuff.  In fact, you can use just that for a fabric softener.  It does not make your clothes smell like vinegar and it keeps your washing machine sparkling clean!  I found a fabric softener recipe that I really like too.  It is vinegar, water, and conditioner - yes conditioner!  I buy the cheapest bottle of conditioner I can find.  Suave has a big selection and you can pick the one you think smells the best.  I am a sucker for stuff to smell good! 

My other homemade cleaner is 409.  This one I am a little iffy on.  I may do more research to find a different one, but this works well.  It is vinegar, dawn dish soap, borax, and water.  It really smells like vinegar when you are using it, like takes your breathe away almost.  Vinegar is just a really gross smell.  But it can clean a shower like no ones business!  I think I will try and modify the recipe - the one I found needs to be diluted.  By the way - a gallon of vinegar is only like $2!  So I can make a lot of stuff out of a bottle of vinegar!

My next big homemade creation is going to be dishwasher soap.  Word on the street is it only cost around 60 cents a load.  Wow!  I am really addicted to my Cascade Complete - so hopefully I will like this stuff.  As soon as the Cascade is gone I am going to go for it. 

Not only is the savings fun, but to say I make all this stuff is fun.  I always am trying to convince others to try it as well.  Thrifty, fun, and earth friendly :)  Yay!    

Wednesday, January 4, 2012

Goodbye 2011 - Hello 2012

I must say I love New Year's.  In fact, in my bachelorette days New Year's Eve was my favorite event and I always managed to get out of work both the Eve and the Day.  That allowed me to do a lot of celebrating ;)  There is something about it being a new year - I can't explain the feeling it gives me.  Just the whole idea it's brand new and I can make this year whatever I want it to be :)  It's like everyone gets to start over. 

I was reading my dear friend's blog and she did a recap of the year and I loved that idea so I am going to completely copy her.  Hope you don't mind Tracey :)

Saying goodbye to 2011 - a lot happened, good and bad. 

January 2011 - our first month without Ella.  It was tough.  We made it though.  We had to make a lot of adjustments, getting use to not being so busy with all the medical stuff, the phone calls, etc. Suddenly it was all gone.  It was odd....unsettling - like a huge part of my life suddenly vanished.  Even though it was hard to deal with that stress all the time - it made me very sad when it was gone.  On a happy note Raymond's 34th birthday was on the 28th.  We met up with my Sissy Megan and my Dad Doug in Deadwood, SD and celebrated Raymond's big day.  It was a BLAST I tell you!  Right guys?

February 2011 - We had our first family ice fishing trip.  Otherwise very boring month.

March 2011 -  My cousin did a very thoughtful project at school in memory of Ella.  It touches my heart every time I think of it.  A group of students and herself were able to get fabric donations and they made blankets for the children at the Children's Hospital in Denver, CO.  You guys are amazing!  Thank you again from the bottom of my heart! 

April 2011 - Joe had his first swimming pool experience at Evan's Plunge in Hot Springs, SD.  He loved it and I realized my boy is probably the next Michael Phelps.

May 2011 -  A very special....wonderful....adorable boy turned 4 yrs old.  To celebrate we had a robot birthday party.   Love you Blakers!

June 2011 - We took a much needed vacation to Arkansas.  It was a great time!  It was wonderful to see the people we love and get to relax.  Also, I went into a canoe in a dirty creek - something I never thought I would be able to say :)  So now I love to tell people because those who know me well  know that is out of character for me.

July 2011 - I turned 27 yrs old - 30 is coming up soon!  For a birthday present to myself we painted the living room.  The older you get the more exciting your birthdays are apparently! 

August 2011 - I was a waitress/bartender at the Sturgis bike rally.  WOW!!!  is what I have to say about that.  It was my first year, but I loved it and if I ever get another opportunity to work at it again I will snatch it up!  I really enjoyed it!  I worked with a great group of people and made some nice pocket change :)

September 2011 - Ummmm.....yeah I got nothing, must of not been that exciting of a month.  I think that might of been the month I told Raymond we are getting married.......!  Then changed his facebook status to "engaged" without him knowing.  Love you Raymond!  Really though - he wanted to marry me he just needed a little push.......that's all.

October 2011 - We had a visit from Raymond parent's, Mom Judy and Dad Robert.  It was wonderful to see them as always.  Another very special......wonderful.....adorable boy had a birthday.  Joe Joe turned 2 yrs old :)  My brother, Michael, scared the living daylights out of everyone and was in a terrible auto accident :(  The 29th was Robert's 2 yrs in heaven birthday.  I miss him, but it's comforting to know he is with his sister.  On Halloween I took a giraffe and a hockey player trick or treating.

November 2011 -  Again, a pretty quiet month.  We hosted Thanksgiving at our house.  My brother Michael was transferred from the hospital in Mandan, ND to the rehab hospital here in Rapid City, SD.  Which was wonderful because we were able to spend Thanksgiving with him.  They even gave him a 3 hour pass to come to my house for dinner.  Also, Raymond bought my engagement ring, on Black Friday to be exact - but we picked it up in December so technically that is next months recap right?

December 2011 - On the 14th was Ella's one year in heaven birthday.  I was sad but decided to turn that frown upside down and celebrate her heaven birthday. I know she is in a much better place than here, so we should be happy not sad.  We can still miss her though!  I got my ring from Raymond this month and it was gorgeous, he did a perfect job.  I know he put a lot of thought into his choice, he looked at lots of rings, took advise from everyone, and saved up his money for a long time.  So thank you :)  I love it! Blake had his first Christmas concert with his fellow preschoolers.  It was very cute and he did a fantastic job! We hosted Christmas at our house.  It was a nice time - Michael was discharged from the hospital and home to enjoy the holidays with all of us too.  Santa spoiled the kids and we ate lots of yummy food! 

So there you have it 2011 in a nutshell!