01 November 2010

New Blog

I have started a new blog.....I will only post here if I am having EDS issues.  Right now, I seem to be having more fun blogging about my boys and daily life here in our home.  So, if you are following me...for fun or to see what is going on in my world.......please go to the following blog and become a follower.
http://snipandsnailandpuppydogtail.blogspot.com/

Ben Heart Update

I just wanted to post a quick update for all my family and friends who have been praying for Ben.

I spoke with the cardiologist today.  They got the results from the 24 hour heart monitor.  He said that Ben's heart rate is elevated, but it did fluctuate.  The important thing is that it did change with activity.  Ben's little heart just runs like a hummingbird.   His heart function is normal.  The doctor would like me to take Ben to see the Heart Rate specialist in 3 months.   I was told that Ben's high heart rate is abnormal, but since he is doing better and it is a constant high we are not going to push the panic button now.  BUT, it is not something we are just going to forget about either. So, we are going to monitor him for problems and see where we are in 3 months.

We spent the weekend out in Holyoke, which usually triggers all the problems we have with Ben.  (We have actually debated not moving because of it.)  This time Ben was great.  The rest of us are a little snotty, but not Ben.  He is doing super.  I think that after seeing the pulmonologist/allergist and getting his allergy medicine, we are doing much better.  I am so happy to not be worrying about him after this trip.

I am starting to feel better about Ben and all the health problems we have had this summer.  I think we might be on the other side of this thing.

Thank you all for your support and prayers.  I fully believe in the power of prayer.  Thank all of you and God for the wonderful outcome. 

27 October 2010

miserable

I feel down right miserable.  I have got some cold thing that is killing me...okay that is exaggeration.  But, I am feeling pretty bad.

I did manage to get through Ben's Halloween party.  It was awesome.  He is going to be Tigger for Halloween. He loved it and was so cute for his party.  He did great trick-or-treating in the school.  But, he did get rather warm...his poor little cheeks turned run poor kid.

I love my family, but I am ready to sleep.

25 October 2010

I Can

I can be a good Mom and Wife.  I feel as if I have been swimming in a pool of syrup, keeping me from being who I want to be.

My house is not in the best condition that it could be, but it is getting there.  I have never been a great housekeeper.  And, it has really bothered me.  I have let it get out of hand at times and then don't know where to start.  A dear friend turned me onto Flylady.com and that has helped tremendously.  It is a great guide to find a place to start.  It has also helped me to start at one place and not feel like I have to do it all at one time.  I now have a routine to keep the basics clean and I can keep going to get through the rest of the junk.  It is going to be so nice to have my house clutter free by Christmas.  It is also nice because when we do decide to move, it will be great to be able to pick up and move what I want to take and not move junk.

I guess I am feeling pretty good because I got the boys to school on time (fed and dressed well)....picked up a package from a friend....put together a great dinner in the crockpot....empty the dishwasher....and start a load of laundry.  All of this before 10AM.  I am feeling pretty good about it.  It also helps that everyone slept until time for the alarm to go off.  Yeah...it was awesome.

I am feeling great....life is good.  God is great and I give him thanks for all that he has given to me.

Dinner:
http://family.go.com/food/recipe-cp-629856-chicken-and-sweet-potato-stew-t/

24 October 2010

Home

Home again, home again, jiggitty jig.

It is nice to be our house again.  We went to Holyoke for the weekend and it was eventful.  We went and looked at houses.  There is nothing out there that I would like to buy or live in.  They all need a bit of work.  I am so looking forward to moving as soon as we can, but I do not want to jump into a house that needs work.

We still need to put our house on the market.....and I was all for it, but now I am not so sure.  I want to scream because I am so confused.  I want to make sure that Ben is healthy.  So, not only is that a problem, but I don't want to jump into a house.  I want to make sure it is something I want to live in for the rest of my life.

I checked the price of our house on Zillow.....WHAT!!!!! It is way lower than I thought it would be these days.  We went from a 3 bed 2 bath to a 5 bed 3 bath and our house has only appreciated $8,000 since we bought it....and we put all that work into it.  We might be able to get what we put into the basement, but nothing else.  We have done so much to this house.  How can this happen....we have been here almost 6 years.

I want to move out there to be near the family and friends.  We really need the support with all that is going on in our lives.  Ben could do worse there, but we do not know.  I know that, for me, that it would be better for me.  I can use all the help I can get.  I have realized this weekend that things are harder for me than I thought.  My hands are getting worse.  My left hand feels like I have lost the padding on the first and middle finger.  I am  also having massive pain in my right thumb area.

I know that I am really rambling and not sure what is what.  Nothing makes sense right now.  I want to move, I want to do what is right by my family, I want to be near our friends, I want to live in a house that I can live in for the rest of my life.

Pastor reminded us today that we have what we have by the grace of God.  God will watch over all of us and give us what he knows we need.  I am giving this up to God and praying for some guidance.

20 October 2010

Not sure

It has been one heck of a day.........

It started off well enough.  I took the boys to school and came home to enjoy myself.  I started on my cross stitch and something reminded me that I needed to call and get the windshield replaced.  I called and got it set up....then I was told I had a $250 deductible for the windshield.  WHAT!!!!  When I switched the insurance to USAA from State Farm, I was told that the windshield was covered under the glass coverage.  I spent an hour arguing with them about it.  Ended up I need the windshield replaced before we go to Holyoke tomorrow.  It is so pitted that I can hardly see through it at dust.  So, I filed a complaint/claim so I might be able to get the money back.

I then remembered that I needed to call the Vision Insurance to make sure I was covered.  I called and was told that there was no vision on Matt insurance.  Insurance that we are paying through the nose for these days. I asked questions about the AOG's policy and then was told that they do not have vision listed on the things that they are covered.   I called the AOG and talked to Janice then.  She said that she had just been on the phone with them earlier that day and the underwriting for the AOG insurance had not been completed yet.  So, if I want to get my eyes checked and my new glasses, I have to pay out of pocket and get reimbursed.  Well, how the heck can I do that?  I just paid $250 to get the windshield fixed....so, now the windshield will be new and pretty to look out, but I still won't be able to see clearly because I do not have my glasses.

I went and picked Ben up from school and we had lunch.  After I put him down for a nap, the peds office called and let me know that I needed to take Ben in to get his blood work done today.  I was told that the Quest office was the place to go for my insurance.  So, after freaking out a minute about my 3-yr old having to get blood drawn.  I started to make and appt.....I first thought about doing it after I picked Max up, but then decided that it might be more traumatic for Max to see it than to have it done.  So, I made and appt with Quest for 2:10.  I got there about 10 minutes early, but they made us wait.  When I did get up to the desk to fill out paper work, I was told that they did not take my insurance.  So, I had to go somewhere else.  At least quest told me where to go and it was not that far away.  Ben and I rushed over because I had to pick Max up at 3:00.  We got to the office and the woman behind the counter was so stinking slow I thought I might just loose it.  Finally she told us to come back....guess who was drawing the blood.  HER.  Finally she got started and Ben was a champ.  He sat in my lap and watched as the needle went in and the nurse fished around for a vein.  4 vials later we were out the door with 2 urine collection things.  (still not sure how was are going to do that out of town this weekend)

I did make it to school to pick Max up in time. Then, realized that today was the fundraiser pick up day.  AAAHHHHH....I could have gone earlier and picked it up, but since it had slipped my mind I had to stand in line with all these kids and moms.  20 minutes to pick up one little bag of candy my mom ordered for the boys.  

When I got home I started to cry from the sheer pressure of the day.  Max made me feel horrible for it when he started to cry too.  I stopped, but still zoned out a bit.  Until, I realized it was 5 pm and I had not even thought about dinner.  Chinese it was tonight.  Not healthy, but at least I fed them.

They are currently picking up their things before bed.  I am looking forward to that so I can finally let it all out and really cry.  It will do me good to just get it over with so I can start again tomorrow.


So, I am not sure if it is a good day because I handled it all without a major break or if it was a bad day because I had to handle all of it.

18 October 2010

Ben

So, we are home and the boys are tucked in bed sound asleep.  It is nice to have a quiet night.  I might be able to relax/release now.

I took Ben to see the Cardiologist.  It was so scary. The doctor was very nice so it was easier.  He had an EKG before we saw the doc and he seemed pretty happy with it.  We chatted for a few minutes and I gave him background and history. Freaked me out when doctor decided to do an ecocardiogram right away.  We got to see his heart on the screen.  From my lay person's eye.....it seems that it was doing all that it should.  We were able to rule out EDS for him and masses or tumors.  That is all good.

Tonight and for the next 24 hours, Ben is wearing a heart monitor.  It is a little creepy to see him walking around with this little box attached to him.  It does not seem to be bothering him any.....he ran around with Max tonight acting like nothing happened.  It was kinda funny to see him keep stopping to move it up and then go again.  Poor guy.

I am happy we have ruled some things out, but it is not totally reassuring.  There are so many other things it could be.  The doctor thinks it could be a heart infection.  He said that we are starting with the easy tests...it will be less traumatic for Ben.  Which is great, but I wonder if it will get us to the end result soon enough.  I know that we are ruling out the things that are easy to test for...that is great....why can't we test for it all?  We will most likely be getting blood drawn next week to check for infection, thyroid and a few other things.


Wait and see.....give it to the Lord and he will protect us.

Fall?

It is nice and chilly today.  AND, I love it!  I did not turn the furnace on, but we did turn the fire place on this AM to warm up the main part of the house.  Now, it is perfect. The boys are not so sure....it is kinda gray and they really wanted to go outside and play.  Good for them it will in the 70's tomorrow and we will be out playing.

We have the cardio appt today and I am nervous, but as my dad says.  Don't borrow trouble.  It will all be okay, and if it is not, we will figure it all out together as a family.  And, I mean all of the family....Me, Matt, and all the parents on both sides.  Everyone has been so supportive of all that is going on.  Thanks guys.

Matt is off doing his thing and both of the boys are at school.  It is awesome to have some quiet time to myself.  I am not running around shopping or having to do much.  I am happily sitting her with my coffee, watching the Today show and writing.  Yeah....a few minutes to myself before the running of life starts again.

So much for time to myself.  Ben's teacher called to let me know that Ben had pooped on the floor and stepped in it.  I guess he was really upset....so off I went.

17 October 2010

Not sure what to title this.  It really is just going to be a smattering of thoughts......

I know I just blogged about the Disney thing.  But, damn, it really bothers me.  Well, not the Disney thing exactly.  I had and have so many plans.  When Matt and I met, we talked about doing several things together.  1st - move to Holyoke
2nd - go to Paris
3rd - go to Fiji
2 and 3 might be flipped. But, they are things we wanted to do.  Matt is 6 years younger than me....I knew that I would get old first, but I thought I would be able to have lots of fun/life with him before I got OLD.  Now, I am not going to get mentally old, but physically before I thought.  Really, Matt won't even be 30 until next year.  So, by the time he is 35, he could be pushing his wife around in a wheel chair.  Really?  It just does not seem fair.  I love him so much and really wish/hope it is not like this.  He deserves a full happy life.

I do know that traveling is not high on his bucket list, but it is on mine.  He would be very happy to move to Holyoke and never leave again.  I am happy to go to Holyoke, but I still want to see so much more.  I want to be able to walk through the castles in Ireland, swim in the ocean in Fiji, climb to the top of the Eiffel tower.  I know that we are working hard to pay off our debt and I want that too.  But, do I want that and put off traveling until we can pay cash with the possibility that I may not be in good enough physical condition to do it?  I am just not sure how I feel about it all.  We will have all the debt paid off in a year or so.  We are going to Disney no matter what...might take 18 months, but we might be able to pay all cash for the trip.  But, then how long will I have to save to go somewhere else?

I am trying to be positive about my condition....but I trying to be real about it too.  Knowing the possibility of not being able to do it later, makes me sad.  There are so many things I want to do.  There are so many things I want to do....BUT, I need to do them before I cannot.

I do know that we will be in a better situation in a couple of years..... I am hoping that once we hit that point we can take a major trip every 2 years.  That is my plan.  I have not told Matt yet, but that is my plan.  I will convince him over time. He is so wonderful to me...I am sure he will not be hard to win over.  I know that he does not totally understand how I feel or what is going on with my physically, but he does try to help me out whenever he can.  And, I know that my happiness is important to him and I appreciate him.  We will work it out together.

Matt is a wonderful man and I am so lucky to have him.

DISNEY

So, as a family, we decided that we are going to Disney.  Everyone is so excited.  We are all looking forward to it.  We have started a jar with money in it.  We are going to save and save money until we get there.

I took the boys to the bank with their change from their piggy banks.  They were so proud to tell the teller we are saving for a trip to Disney.  We bought the jar at Walmart and put pictures of the Disney characters on it.  The boys decided that they were going to spend some of their on toys and put some in the jar.  I am so proud of them....they get that we are wanting to do something in the future and they can still get something now.  It is awesome to see them learning to save.

It is great that we are all saving BUT, dang, it is still expensive.  I started looking around on line to see how much we would need to save.  I decided that we want to stay in the park, get park hopper passes and the food plan.  All of that including air fare is going to run the family $3500.  We would really like to pay off the CC before we go and don't want to go into more debt to pay for it.  Having said that, I really want to take the kids.  It will most likely be about 18 months before any of that happens.  Maybe longer.

I want to go as soon as we can.  I want to go sooner rather than later because I am not sure how I am going to do later in life.  I already have so much pain on a daily basis.  I know that I can over do it easily and it scares me. I am not taking pain meds at home (at all).  I think I may have to take it daily while we are there.  I am really hoping that even though I do that I will be able to function mentally and enjoy the trip.  Without meds, I am wondering if I can function physically.  I am 35 and I don't want to be in a wheelchair when we go to Disney.  That does not seem like fun to me.  I don't want to take away from my boys enjoyment of the experience.  Matt likes the idea of a wheelchair....we will get to go to the front of the line and go first since I am a invalid.  The whole idea sucks.......

I want to be able to go to Disney and enjoy it with my kids.  I want to go now while I can, but I don't want to put my family finances in jeopardy either. It is hard to decide what I should do.  Being in pain and being sure that life will bring more pain (maybe even worse), I want to live and enjoy what I can with my family while I can.  What do I do???

13 October 2010

Almost

Today is a good day.  The basement is almost completely finished.  BJ has been over finishing the drywall, painting and doing all the little odds and ends that need to be finished.  I am truly hoping that by the middle of next week I will be able to have all the furniture back and everything organized.

Since Matt has moved 90% of the things from downstairs to the garage. I am hoping to get all the things put away and set up just the way I want it to be.  I am going to be getting rid of things again.  I know that I am going to get rid of some furniture that we really don't need.  I am really starting to work through, in my head, what I really want to move with me to Holyoke.

I was really excited about getting the basement finished....it is one more step closer to our goal of moving.  Me, not good at waiting for things, I started looking for houses in Holyoke.  There are two country homes I really want to look and buy.  But, Matt is the cool calm on in our house and reminds me that we have to wait.

Things are just not going to be totally in order for us to be doing something that drastic so soon.  I am thinking that I will take the rest of the year to get the house all cleaned out and in order.  I am hoping to put the house on the market in January.  House sales are so slow that I think putting it on the market sooner would be better for us.  If it sells before we are ready to move....looks like apartment living for us.  It would be tight quarters, but I don't see why we could not do that.  We can move things to Grandma's house or to a storage unit if we need to.  Might even save us some money and we could make good interest on what we get out of this house.

It is really true that Max should finish out the school year here.  I know what it was like to move schools during the school year and more than one time.  So, I am going to sit tight and let Max and Ben finish the school year here.

Hopefully, when we are ready the plan will be there.  God has a plan for us and we will follow his lead.  I just need to learn patience and that has never been my strong point.

11 October 2010

So sad

I have let my feelings get hurt, yet again.  I belonged to a great meetup group.  Most of my friends belong to the group.  I have had a falling out with the organizer, but I did not do anything to get myself kicked out of the group.  Too bad, that is what happened.

I am sure that she will read this. And, I just don't care at this point.  I have said and will not say anything that is not true.

I joined this group two years ago, or so.  I made some really great friends in the group.  I paid my dues like everyone else in March.  It is suppose to be for a whole year.  I know that I am being petty, but I want my $4.  I did nothing wrong according to the group rules.  All I did was have a fight with the organizer.  After the argument and falling out (end of friendship too)....I kept my distance, but liked being part of the group.  I made other friends in the group and would have liked to stay in.  I was not bothering her or doing anything that would have upset her.  Guess she just did not like me there and decided to kick me out.

I am so sad that this happened.  I am not upset that she and I are not friends anymore....I am not truly upset about being kicked out of the group.  I am upset that she took a connection away that I had with some friends.

I thought the petiteness was over, but I guess I was wrong.

This person has really hurt me and I have seen that people can be horrible.   BUT, I am not going to let this one person put me out.  I still think that people are generally good.  I will continue to think that, despite some people.

10 October 2010

Hmm

We did Ben's allergy testing on Friday.  It was not a bad experience.  He only cried once....it was about 1/2 way through and I think it just itched so bad he was upset.  We sang another song and he calmed down.

It was quiet an experience for Ben and me.  They used marker and numbered Ben's back according to the number of the allergen they were testing.  They made little scratches with the liquid.  There was a positive and negative.  The positive, obviously, came up.....but the cat scratch came up even more.  Poor little guy is certainly allergic to cats.  By the time it was all done, the cat scratch was as big as a half dollar.  He also reacted to dog, feather, one kind of mold and corn pollen.  He was a real trooper and got a huge bouncy ball for behaving.

I asked them to check the corn pollen.  I worry about moving to the farm with all his allergies.  Some of his allergies can trigger his asthma.  That is the only scary part about all of this.  I asked the doctor his thoughts on moving out to the farm.  Dr. Chaplan told me that as long as we live in Colorado or near by states, it won't matter.  He said that pollens can travel up to 200 miles, so even if we lived in a cement jungle, there could still be pollen and allergens.  Therefore, the plan to move is still on.

We now have a preventative program to keep Ben's asthma and other breathing problems.  We are doing Q-var twice a day and children's chewable Singular at night.  We have albuterol for any rescue times.  Hopefully this will keep his breathing normal.  Dr. Caplan thinks that we might be able to keep the allergies and asthma in check with the new plan.  That would be so awesome.

Now we are going to have to see what the cardiologist says.  We had thought about going to Holyoke this weekend so I changed his appointment.  We are now going on the 18th at 1:30.  We will have to see what happens.  I am beginning to think that the heart rate was related to his breathing problems.  We have been checking his sp02 and heart rate.  Both seem to be more normal now.  I am thinking that the little guy was just struggling to BE at that point and his body did everything it could to make it happen.  I have always known he is a fighter.

God has his hands around Ben and will continue to protect him.

07 October 2010

Here we Go

Today was Max's appointment with the Ortho doc.  Dr. Seigel is so proud of Max.  She said that his rate of healing is amazing.  He is so far beyond what she expected.  He will be ready to get his rods out before Christmas.  Okay, so she said December or January and I begged for December because we have met our family cap for the year with the ins.  Let them pay for it.  We have paid plenty in premiums, so why not take advantage of the system, RIGHT?

Tomorrow is the beginning for Ben.  We got to the allergist/pulmonologist.  We will get his lungs looked at and then all the allergy testing.  I am so not looking forward to that part.  I cannot imagine all the pain the bugger is going to go through.  I am pretty sure his is allergic to most everything.  Scratch tests cannot be fun.....can you imagine being 3 and not understanding what is going on?  I feel for him.  I feel for me to have to comfort my baby all day tomorrow.  It will be lots of movies and Mommy cuddle time.  I am just praying that this testing does not trigger his asthma/breathing issues or his heart problem.  If this truly is the cause of all of his problems, it could be an interesting visit.  Think they have what is needed for someone to is severely allergic to something?  Surely they will be prepared for anything right?  What if he stops breathing because of something they do?

I am really terrified to start all this testing....can you tell?  Monday is the cardiologist.  I had the fleeting thought of going to visit Granna and Grandpa this weekend since we have a 3 day weekend, but then I remembered the dreaded cardio appt.  I was really looking forward to unplugging and go away for a few days.  It really was just a thought in my head....never got a chance to mention it to anyone before I remembered the cardio appt.

Me, I am just plodding along.  I was suppose to do stamp club this weekend, but we were suppose to be getting the basement finished so I thought I would not be able get into my scrap room.  Well, that did not happen.....the guy who has suppose to be finishing the basement for over a year, has put me off again.   He was suppose to be here Monday AM and showed up with a story about having a place to finish in Woodland Park.  He said he would show up this morning and be able to get it finished this week.  Ha Ha Ha....he did not show up again and I have not heard from him.  Pissed off is what I am becoming with the whole thing.  So, that leaves me having changed my plans for him and now....the basement is not done and I changed plans.  Grrr.

I do not have anything planned for the weekend now.  Matt had a meeting Monday for wrestling, Tuesday for Drupal and now again tonight for wrestling.  I know he has to do these things.....but, I am starting to wonder what I am going to get to do.  Scrapping at Bobbie's is out since we are not talking anymore.  I don't want to go to Archivers because that costs money (and I am trying to be on a spending freeze).  Being on a spending freeze prevents me from doing a number of things.  I could go to the basement and play in my scrap room, but that is not really a get away because the kids come down anyway.  I am debating going back to weight watchers....I have gained 10 pounds and none of my clothes fit now, but again, that costs money.  SO, what is there for me to do and where.

I am starting to feel really pent up, frustrated, scared and angry.  And, unfortunately for the family, it comes out with me yelling at everyone for every little thing.  I know what I am doing when I am doing it, but I am so in the moment that I just cannot stop myself some times.  I am trying hard to just give it over to God, but it is harder than I thought.  Knowing something and feeling something are two different things....I totally get what my dear friend Shannon is going through now.  I know that things will all work out and that God has a plan and that I should just hand it all over to him.  BUT, my heart is still breaking and I am still scared for my little one and angry that I have to deal with it all.

05 October 2010

Normal life?

I have scheduled several of Ben's appointments for the end of this week and the beginning of next.  That leaves me in a waiting pattern.  I am not very good at this part of the game.  I am a right now type person.  I know that about myself.....this is killing me.  I am horrible at waiting, but even worse at waiting to find out, what, if anything is wrong with my child.

I am trying to keep life going as if nothing were wrong.....Yesterday I went to the pumpkin patch with Ben and his preschool.  It was so much fun.  He got to pick a pumpkin for free. Catch was that he had to be able to carry it out of the patch by himself.  He had an enormous amount of fun, but I could tell that towards the end he was struggling.  He finally said that he just wanted to go home.  I carried him for the end of the trip.  He was  good sport and had a good time while he felt well.

Today we tried to keep things quiet.  He did really well until lunch.  Well, it was almost lunch time and he started to melt down.  I brought him upstairs and he decided that he did not want to eat.  He just went to bed and laid down.  He slept for several hours and then never asked for lunch after that.  It was sad.  I know my child is not himself when he does not want to eat.  After we picked Max up from school, he seemed okay.  I did take him to swim lessons this afternoon.   I want to keep his life a normal as possible.  He loves doing it, so why take it away from him while he still can???  He did really well, but coughed a lot.  He said that his chest hurt a little afterwards, but he was still smiling.

I brought him home and fed him dinner.  He seemed happy....but with a raised heart rate.  I put him to bed with a 124 heart rate.  He was not doing anything.  I just fed him and we watched tv.  I am not sure why his heart rate was up so high.  It makes me so nervous.

Tomorrow I take Max to the pumpkin patch and Ben has preschool.  Not much else going on....let's keep it that way.  Thursday I take Max in for his arm appt and then we do allergies for Ben on Friday.  

Life is Good.....God watches over us all.

03 October 2010

Okay

I have has several days to digest the idea of Ben being sick.  I have known he was sick, but possibly needing serious care.

I have taken the time to do some soul searching on the whole thing.  And, I have come to several conclusions.  My little boy is strong and he is a fighter. I do not think there is much that he cannot fight.  He is such a happy little soul, even when he is not feeling well.  He was in the ambulance with O2 and when the paramedic asked him how he was....Ben said, "Great."  He is such a trooper.

As I have been praying about this, I have been thinking about God not giving us any more than we can handle.  I have been feeling very selfish about all of this.  I keep thinking that God will not give ME more than I can handle...when, in reality, I should be thinking....God will not give Ben anything he cannot handle.  This is not happening to me...it is happening to Ben.  While I feel the pain and want to protect my child....Ben is the one who suffers.  He is the one with the physical pain the hurts is little body.

I feel pain.  I feel the emotional pain of seeing my child hurting.  I feel the pain of not knowing what is wrong with him.  I feel the pain of all the possibilities of what may be hurting him. I feel at a loss as to why it is happening to my child.  While I am feeling all of these things, I realize that those around me have had problems with their children too.  We have dear friends who have gone through similar things with their little ones.  I, now, understand (or sort of) how they must feel.  With all the emotional pain  I am going through, I finally understand how these brave parents must feel.

I have had the several days of crying and hiding from the issue that I think I needed.  Friday, I slept for 7 hours during the day and then yesterday, Matt let me sleep in until 10AM.  I know that one way that I hide from things is to sleep.  Sleeping means that I do not have to actually think about things.  It is just blank time that I can waste without feeling.  I have hidden from the world and now it is time to get out and be "normal" again.

Yesterday I went to a class to learn to crochet.  I had a great time and learned lots of fun things. I know enough now to be dangerous.  I decided that I am making a blanket (with the 3 stitches I know).  I bought the yellow yarn with the intention of making it for my niece Maggie, but I have decided that it might just be for Ben.  I think he can love on it and know how much Mommy loves him.  It will always be a part of me that he can have with him.  Sounds dumb, but it is making me feel better right now.  Ben has been watching me work on it and he is really excited.  I might finish it by Christmas with all the other projects I have to finish.

In short, I have felt sorry for myself and that has passed.  I have wanted to just think about anything else and that has passed.  Now, I have turned it over to GOD.  HE has a plan.  GOD knows what he is doing and we will follow his plan.  While I might not understand it all or know why things are the way they are, I am going to put it in HIS hands and let it go.  I am going to enjoy every day that I have with my family and not let things get in the way.


God has said, "Never will I leave you; never will I forsake you." So we say with confidence, "The Lord is my helper; I will not be afraid. What can man do to me?"
Hebrews 13:5-6

29 September 2010

Scary words

So, it has been another long day.  Ben was a sick monster most of the day.  He seemed to get a bit better as the day went on.  Unfortunately, that did not last long.  My poor baby is just so sick and we cannot get a grasp on this whole thing.

I took him back to the doctor today. Dr. Lee saw us and was not happy with us.  She is feeling the same way I am these days.  What the hell is going on?  She is just as frustrated and has gone over all the usual suspects for this problem.  So, we are pulling out the heavy guns.  In we bring: ENT, Cardio and Pulmonary.  I am not happy about any of them, but if we have to do it, we have to do it.

It scares the hell out of me to use the word Cardiologist in the same sentence with my son's name.  I really want to have a perfectly healthy baby.  He has been so good this far.  I know that we will get it all figured out, but it is scary as hell right now.  SpO2 levels are in the low 90s but his heart rate is in the 140s.

Where does this put me?  I am in a lot of pain these days, but my child comes first.  I was feeling sorry for myself several months ago.  Now, I am worried to death about my child.  I am in pain, but I cannot imagine what it must be like for him.  Pain is okay, but when you cannot breath or your heart rate is through the roof, preventing you from doing things....that must cause serious pain.

I have been here on earth for 35 yrs, but my baby has only been here for 3 yrs.  Poor kid.  He has so much to look forward to...why does he have to be so sick.

The words cardiologist, ENT and pulmonologist are pretty scary when they are used in conjunction with your child's name.  It is also scary for me to think it could all be my fault.  Well, not exactly my fault, but could EDS be the responsible for my babies illness?

Lord, please watch over him and make him healthy.  I know it is selfish for me to want him here when his rightful place is with you.  I cannot change that fact....I really want him to be happy and healthy.  Please take him into your arms and do what you feel is necessary for the good of my child.

Ready to Crumble

I don't know how mommies do it.  Ben has been sick on and off now for more than 3 weeks.  As I posted earlier this week, we took an ambulance ride on Friday and were sent home with an oral steroid.  We did have an x-ray and we were told that there was no pneumonia.

Matt and I decided to purchase an oxygen monitor at that point.  We had it overnighted and it got here on Monday.  Monday morning Ben has school for 2 hours.  His fever was gone and his color was good, so I wanted him to go to school.  After dropping Max off, Ben looked at me and said, "I just want to go home."  I took him to school anyway and he did just fine.  He was not his normal jumping around self, but he did okay.  Yesterday he was home with me all day.  When we went to get Max, he was back to acting a little funny.  He did not run with the kids, but rather sat on the ground at my feet.

Swim lessons were last night and they both wanted to go (Matt went to Denver for a meeting).  So, I thought I would just take them.  Ben seemed okay, but not great.  I gave him some albeuterol and out the door we went.  As I left, I decided to grab the O2 monitor.  I put it on him and his level was 88.  Normal is 92 or above.   So, I called the clinic and was told to bring them right in.  Mind you, the after hours clinic is almost 1 hour away.  We got up there and he was holding at 92.  Which was good and bad.  The nurse practitioner basically told me that because he was looking at the toys and his stats were good that we should just go home and take an antibiotic.  I told them that we were on the edge going down, not up. So much for listening to a parent.

As soon as we got home, I started him on a nebulizer treatment.  His heart rate ran up to 180 and off to the ER we went.  Mind you, that between the time we were at the clinic and the time we got home...you could visibly see the difference.  We got to the ER and things looked to be stable.  They did an x-ray and told us that he had viral pneumonia.  They sent us home with decent stats.  I feel like no one listens to me.

I am a mom, I know what I am talking about when it comes to my kids. Ben is pale and unhappy today.  He does not want to eat (hello, it is Ben) and he is not wanting to drink a whole lot.  I am pushing juice, but it is not working.  We have had less than a cup in the last 12 hours.  We are off to see the doc again this afternoon.

I am beyond frustrated.  Poor little guy is tired and so am I.  He is lying no the couch... dozing on and off.  I did see the first semi smile in the last 24 hours.  Hopefully that is a good sign.  I just wish someone could have done something before we got to this point.  I am currently terrified about the pneumonia setting off the asthma and us going through it all again.  Right now it seems like we are on and endless cycle.

Wish us luck today....hopefully we can get out in front of this and it will all work out soon.  I hate seeing my baby like this.

28 September 2010

Done

I have deleted a post from yesterday.....it obviously upset someone.  Not that I really care what this person thinks, but it is just easier to let it go.

It is sad to loose a friend in such a way.  I am, however, finished with it all.

27 September 2010

good morning world

Good Morning World,

Long weekend....Friday night started it off with a bang.  Okay, not a bang, but flashing lights.  About 9:30, Ben woke up crying and coughing.  It was so scary.  He started vomiting shortly after I got him up.  When he started struggling to breath, I decided it was time to dial 911.  My poor baby.  I have never been so scared in my life. The little man started to turn a little blue.  Matt and I gave him all the medicine we had.  When the paramedics got here, they gave him some more steroids.  We took a short ride to the hospital where we got x-rays and such.    He got some more oral steroids and we were able to come home.  His little cough got a bit better while we kept him quiet on Saturday.  I did take him to a birthday party on Sunday.  Bad idea.  While I did keep him tame, he still did too much.  He slept in this morning.  I did get him up in time to go to preschool, but he was so tired.  I felt bad for him, but did make him go.  I hope that all goes well.  We shall see.

Last night was bad too.  At 3:30 this morning, I was awakened by the door bell ringing 3 times.  It was so bad.  Scared the crap out of me.  I got Matt up and he got the gun.  We did not answer the door.  We had no idea who it was.....we did peek out and notice that we did not know the car or the person.  I then called 911 and they sent some patrol cars through the neighborhood, but we have no idea what ever came of it.  Needless to say, neither one of us really slept well after that.  I made Matt sleep on the couch.....so he was close to the door and the boys.  A bit freaked out......and very tired.

So, I am enjoying my few minutes alone.  Matt is downstairs working and the boys are both at school.  I have taken the time to sit and enjoy a cup of coffee and play on the computer a bit.  Now, it is time to follow my flylady rules for the day.  Off to shine the sink and change the laundry.

Let's hope that this week goes better.

11 September 2010

To Curl or not to Curl

Okay, so I am going today to get my hair permed. What an awful word, permed.  It sounds totally 80's.

I have talked to the woman who is going to do my hair and she sound professional.  I am looking for big curl...not the tiny ones we got in the 80's.  I actually looking forward to this, but totally frightened at the same time.  My hair is just past my shoulders and so hard to take care of.  With my EDS, it is very hard for me to dry my hair.  I have learned to do it in sections, but it still takes me forever because I have to stop and let my arms rest.  I am looking for this to be so much easier.  I really hope that I can wash it and just let it dry.  Hopefully the curls will be beautiful without me having to do much.

I really like the idea of a wash and go style.  I have tried so many before.  My hair has a funky wave to it.  It is not straight and it is not curly, so I have to do one or the other things to it every day.  I have taken to washing it every three days and then dry it.  It looks really good the first day....I usually wear it down then.  After that, it is two days of pony tails.  It is just easier that way.

So, here is hoping that it turns out the right way.  I will make sure to post a picture tomorrow after I have gotten it done.

Here is what it looks like now.......

10 September 2010

Mom of the week (not)

So, this was a totally weird week.  I must have been thrown off by the long weekend and not taking Max to school on Tuesday.

I am completely mortified that I actually forgot that Wednesday was early release for school.  He was suppose to be out at 1:30....and I forgot.  I took a nap.  I set my alarm to wake me up in time to get Max at 3, like I normally do.  At 1:45 my phone rang.  I sleepily answered it and then woke straight up.  It was Max's teacher letting me know that I had forgotten to pick up my son.  I was told that Max sat down out front and cried because I was not there.  OMG!  I felt my heart just drop out of my chest.  Thank God my friend Kim was there and brought him home.

I swore I would never do that.  My family had forgotten me before at school.  It was one of the worst feelings ever.  I did not want to be that mom.  I guess it happens sometimes.  I suppose I should not be so hard on my family, but still, it was a horrible feeling.

I still feel awful.....I probably will for a long time.  Matt says it is just some thing to learn from.  I am sure that it was a mistake on my part.  It was on my calendar, but I was so busy getting the rest of life together that I forgot to look.  My calendar is now color coded and I look at it each day.  I pray that I never do that again.

I love my kids and I want them to know that I love them and always will.  I really hope they know that I will always be here for them.

30 August 2010

Life

Life has gotten out of hand today.  I have been doing so good.  The last several weeks since Max started school have been pretty good.  I have been getting up each morning, feeding my kids, getting myself dressed, putting on make-up and getting everyone out of the house early everyday.  Early to the point that I have had to wait to even let Max go onto the playground.

Today I was not feeling well this morning.  So, while I still managed to do all of the things above, except get out of the house too early.  I planned it so that I could get there just in time for first bell and the kids could play.  Unfortunately, life did not go as planned today.

I pulled up to the side of the street on the other side of the elementary school, as I always do.  I got out, opened Max's door enough for him to get out and went around to the other side and get Ben.  Max was on the road side of the car.  Just as I went to get Ben and was undoing his seatbelt, I looked up and saw the car coming.  I yelled Max and he turned to look at me....still in the car.  THANK GOD!  Just as I got his attention this "domestic Danica Patrick" (thanks Jon for the reference) drove by and clipped my car door.  It was very unnerving to see pieces of my car flying from the door where my son was suppose to be getting out. Max is fine, a little worry about the car.

Standing there a bit stunned, I realized that everyone was fine and it was just the car.  The women who hit me, almost did not stop.  I got both of the kids out of the car and put them on the sidewalk.  The woman did stop and the first thing I did was write down her license plate.  I was trying to think through what was going on....I decided that since I had her plates, I would make sure Max got to school and then deal with the rest.  The teacher at the cross walk told me she would keep an eye on the other lady.  I thought that was odd, but was thankful.  I took Max to the front door of his school where his teacher was on duty.  He was upset about the car...it was so sad to see.  Ms. Marsh is awesome!!! She took him and got him calmed down so I could deal with the accident.  (Ben stayed calm through the whole thing.)

I got back to the car, swapped insurance information and called the police.  It took forever for the state trooper to show up.  I was able to call USAA, file the claim, and set up the body work before the cop showed up.  I really should not complain about him being late, he was super nice.  I have disabled vet plates on my car and I think that made things a bit easier on me.  I found out in the course of things that he was retired army.  Anyway, I had forgotten to print out the new insurance card (I have never had a reason to use it), but he did not write me a ticket for that.....Yeah.  I did over hear him writing the other woman a court summons for the same thing.  He did have to write me a ticket for opening my door into traffic.  Yep, you read it right.  This woman, who is not paying attention, hits my car, could have easily hit my kids and I got the ticket.  There was no loading zone there, so it was my fault.

When the cop started to write me that ticket, the woman decided that she did have damage to her (after insisting there was none).  She told the cop that there was something wrong with the gas tank.  She stated that when she went to look at her car that after she opened the gas door, the cap was loose and there was gas coming out.  The cop nearly laughed at her.  He told her that there was no way that could have happened from the damage done to my car.  But, he did tell her that her ex-boyfriend could have done something to her car.

We all know way too much about this woman.  She was parked, half in the road, when I pulled up.  She admitted she was not looking at the road, but was looking in her rear view mirror to make sure her kids were crossing the street safely (can you say irony?).  She decided that she needed to share with me that she is 24, just moved back in with her parents, has two kids (8 and 5) and she was not sure the insurance was good.  I was totally amazed by this woman....standing there in front of me, admitting she was not watching where she was going in a school zone, sharing all of her issues with me.  As I stared at the "thing" in sweats, no shoes, and a bathrobe, I just wanted to tear her hair out.  She could have easily killed my kid if I had not been paying attention and she is telling me all this crap about her sorry life.

Okay, maybe I am a little mad about it. At least I have got all the logistics figured out to get the car fixed.  I went by the body shop today and found out it will be almost $2000 to fix my car.  They are not going to get the part until later this week, so I am going to take it in next Tuesday.  The insurance company is going to pay for a rental while my car is getting fixed.

All in all, it has been a long day and I am thanking God that I still have my son and he is healthy and happy.

All of this and I am sick and Matt is out of town.  I am pretty happy with myself for how well I handled all of this.  Keeping it together has not been my forte lately, but I did it.

19 August 2010

First Day


Today was Max's first day of kindergarten.  He was so excited when I woke him up this morning. (Normally he is up at 6, but I woke him up at 6:30.)  He ate his pancakes as quick as he could and hassled me about getting him dressed (I have to help because of his arm).  Everyone was ready to go out the door at 7 this morning.  Which is funny, because we do not have to leave until 7:30 or so.

We played out front a little and took bunches of pictures.  It was so much fun.  I got some great pictures...great pictures and funny pictures.  But, Max was ready to go.  He just wanted to leave, RIGHT NOW.  So, we left.

We got there early.  About 10 minutes before we are actually suppose to be there.  We got out of the car at 8:05.  That is the time that the teachers are out at the playground.  We went around back of the school and it was total chaos.  Both of the boys were off as soon as we told them they could go.  It was hard to keep track of them.  Ben blended in with all the other kids, even though he is so much smaller.  There is one big play thing in the center of the playground with ladders and slides and much more.  I think 80% of the kids were on that one piece.

Finally, we saw Katie and her parents come around the corner and Max was off.  He wanted to go and see his girlfriend.  We stood around with Katie and her family until the bell rang.  We got some great pics of the two of them together.  Then the bell rang.  We found Max's teacher and the line he was suppose to be in.  He was near the end of the line.  I gave him his snacks, hugged him and told him he was amazing and he would do great.  Matt gave him a hug and told him to have fun.  At that point, Max looked at me, so I gave him another hug and he just began balling his eyes out.  He was so upset.  I had told myself that I was not going to cry, but that just broke my heart.  I did not cry in front of him and tried not to let Ben see either.  Ben was upset too.  He wanted Max to come home.

Ben, Matt and I went around front and had the BooHoo  Ya-Hoo breakfast with other parents from the kindergarten class.  It was fun and most of us managed to not cry too much.  I met some of the other moms from Max's class.  Ben stopped being upset when the Bulldog mascot came around and hugged him.

Matt went to work and Ben and I played the rest of the day.  We had fun....Ben learned about a glue stick and  had a blast gluing everything he could.  I have some great collages.

We pick Max up at 3:00.  He was so happy and said he had a great time.  He actually told me that kindergarten is way more fun than preschool.  He was so hyped about it.  I tried to get him to tell me what happened, but he said he could not remember.  Poor guy did not even remember all that he ate for lunch.  As far as I know, all he ate was a salad and a yogurt.  I sure hope it was more than that.  He finally told me a bit about his day as I prodded him for information.  He had music school and sang songs there.  He got to color and did something with letters on the letter rugs.  Not sure what all of that means, but he loved it. He also told me that he met a girl named Olivia.  We will see how that goes.  Katie might get jealous, but she is not in his class and Olivia is.

Unfortunately for me, he was in tears again by bed time.  He wanted me to go to school and stay with him for the day.  I told him that he is a big boy and he can do this by himself.  Let's hope tomorrow is better than this morning.  It is a great new chapter in all of our lives, but I am still not sure how I feel about it.

Next Monday, I have to drop Max off and then go to the preschool to drop Ben off.  We will have to wait and see if I can handle that one.

14 August 2010

Annoying

So, yesterday and today, I have been down with a sore back.  It is awful.  I have had to try to sit still and not do much.  Has not really happened.....I have done some laundry and such.  That was until Matt got onto me about it.

Now I am sitting here.  From my favorite chair, I watch the world go by.  Matt and the boys cleaned up the living room today.  Now they are out in the garage today.  I think they have already changed the oil in my car.  I know that Matt is putting shelves up now.  I can tell because of the noise.  I feel like I should be out there helping.  If I am not out there to help, then I cannot complain if they are not exactly what I want.  I have to just be thankful that my husband has put them up for me.

I am resting so I can go with the family to the Rockies game tomorrow.  There is no way I want to miss this.  It is going to be so much fun.  The kids are out of their minds excited.  Each of them have a hat and a huge purple finger.  They are ready to go now!  We are all looking forward to it.  It is going to be a great family time.  And, a fabulous end of the summer present.

Next week is Matt's last week at the AOG, Max's first day of school and Ben's meet the teacher.  It is the end of summer and it is happy and sad all at the same time.  Matt is starting his new job on the 23rd.  It is a big step for the whole family.  I know I have said it before and I will say it again.  WE are excited and life is going to be better for us all.  It is going to be a huge difference for all of us.  Matt is going to be working from home. While we are all excited about this....we are not sure how it is going to all work out.  He will have his own office in the back bedroom.  We are going to put the day bed in there, just in case we need to have an extra bed for guests.  He currently has two desks in there....both junkers, but I am hoping to come up with something better for him.  He has asked for a bookshelf, but that is it.

I am sad that my baby Max is starting to full day kindergarten.  That means that he is no longer my baby.  He is going to be a big boy next week.  I am not sure what my days will be like without him at my feet all the time.  It is going to be hard.  It has been 5 years of him right there.  I know that he has been to preschool, but the most he was gone was 3 hours 3 days a week.  Now it is going to be almost 8 hours 5 days a week.  If that was not bad enough, Ben starts preschool the following week.  He will only go 2 hours a day 2 days a week, but still.  My babies are all growing up.  I am not sure if my life will get simpler since they are not going to be under foot, or busier because I will want to do somethings with the classes?  What kind of a soccer mom am I going to be?  Before I was just a stay at home mom, but now it seems to be a transition for me.

I am going to have to reinvent myself again.  From a home mommy to a school mommy.  Is there a difference? I am hoping so....I feel like I have failed at the home mommy part.  Let's see how the changes go.

10 August 2010

New Beginnings Part 2

So, Matt found out yesterday and signed a contract for a new job position.  I wanted to yell it from the mountain top yesterday, but he did not want me to tell anyone.  I think that maybe it had just not settled in with him yet.  Today he sent an email to all of the people at work and slowly started to tell friends and family.

Me, I am so stinking excited that I can hardly stand myself.  It is not totally what we were expecting, but it is still great for us.  Matt will be working from home for the most part, but will have to travel a bit.  He will be leaving for 2 weeks starting on the 30th of Aug.  I am glad that it got pushed out to that date.  He will be here for both of the boys first days of school.  He will also be here for Ben's and my birthdays.  It is awesome.

It is going to be a big adjustment for us.  I was looking forward to the boys both going to school this fall.  Max will go full time and Ben will be going 2 days a week for 2 hours a day.  I was looking forward to the couple hours a week of peace and quiet.  I am wondering if I will still get the down time with Matt home.  I know he is suppose to be working, but it would be quiet time for the two of us too.  Not sure how that will all work out.

It seems to be a beginning for all the boys in my family.  I am not sure exactly what I am feeling.  Left out might  explain it.  I am not going to be doing anything new for me.  My scrapbooking group has fallen apart.  So, I do not even have any place to go on Saturday nights.  It has been almost 5 weeks since I have gone out of the house by myself.  I have gotten quiet time in the house while Matt takes care of the boys, but for some reason it is just not the same.

Got to figure out what is going on in my head with all these new things happening here.  Please, don't misunderstand what I am saying.  I am so thrilled that all my boys are doing well (my husband is one of my boys).  I am just not sure where I fit in.  I fell like all I do is work for them, but that should be enough for me.  I love being home with the kids and would not trade it.  Maybe I will feel more useful after both of the kids go back to school and I can do things for the classrooms.

HAPPY DAY in our family.

05 August 2010

New things

Today is going to be all about trying some new things.  Okay, not some, but two.

I have found a new recipe for Chicken with Black Beans for the Crop pot.  I am really excited about it.  It starts with frozen chicken breasts.  I love that idea.  I can never remember to thaw chicken breasts the night before.

4 frozen chicken breasts
1 can black beans (drained)
1 can corn (drained)
1 jar salsa
1 pkg cream cheese.

Put all but the cream cheese in a crock pot on high for 4 hours.  Then put cream cheese in for last 1/2 hour.

I read all the reviews and they were all good.  Some people said they had to add some flavor with red pepper flakes.  They also said that the cream cheese cuts the spice some, but not the flavor.  We shall see.  I am pretty excited to test it out on the family tonight.  A real dinner with actual real effort from me.  Let's see how that goes.  LOL.

I am also going to work on toilet paper roll albums.  Sounds weird, but I am excited about it.  Cheap way to make something for others.  I think these might be fun little Christmas gifts.  They seem to be really easy.  I hope they turn out as good as I think they might.  If they turn out good, I will post pictures tomorrow.

My house is getting cleaned up and organized a little at a time.  I am really enjoying getting life in order.  Living room, part of the kitchen and one bathroom finished.  Scrap room is started, hopefully I will finish it today before starting on my project.  Oh, my bedroom is finished too.  That makes me exceedingly happy.  It is nice to lie down and be in the calm of my room.  As soon as my new body pillow comes, I cannot wait to sleep in there too.  It will be so nice to sleep in the same bed as my hubby, again.

Life is good....maybe I should look for some of those shirts so I can remember that every day.

03 August 2010

priorities

What are my priorities in life?   Last week I was in a tremendous amount of pain.  I had spent two days in bed and then Max fell and broke his arm.  It is amazing what a bit of adrenalin can do for you.  I was not upright when we left for the hospital with him, but I was up and around.

It was amazing that for the several days after that I was not worried about my pain.  While it was there in the background.  I was not focused on it at all.  Max ended up needing surgery....that put the pain off a little longer.  Then we went out to Holyoke for the fair and I was so worried about Max getting hurt again that I just kept going.

By Sunday I was just so worn out that I actually spent the whole day in bed, literally the whole day.  It was great....I slept the whole time.  Not just lying there, but truly sleeping.  It was great.  I felt much better pain wise and emotionally after that.

Yesterday was another day of doctor appointments in Denver, but I just went through the motions.

This morning I woke up with a new focus.  Thinking about all that has happened in the last week, I realize that my pain needs to take the back seat to my children.  They are what is most important in my life.  I am here to take care of them and prepare them for the future. Who knows what they will be in the future.

26 July 2010

Just thoughts

Before I get started writing this blog, please note that I would never actually do anything to harm myself.  For those of my friends and family, this might be very hard to read, but I feel the need to share.

I am living with my EDS, but not handling it well.  I have done plenty with my husband and boys this summer and never intend to stop, as long as I can.  But, it never fails that I feel like I should be doing more.

I am feeling horrid about the situation that I have put my husband and kids in with my condition.  For example, the other night I took a sleeping pill.  I took it late because I have been trying not to take them, but that night I was having considerable pain.  The next morning, I was having a hard time waking up.  Since I sleep on the couch, Max always comes and sees me before Matt.  Because I was having a hard time waking up, Max walked into Matt and said, "Mommy is not waking up because she took too many pills."  OMG, I felt horrible.  Can you just imagine it?  Next Max is going to say something to someone at school and I am going to be accused of being a drug addict. AAHHHH, how very scary.

As far as Matt.....he pays for my disability every day.  The day starts with me hurting every morning.  Matt had to make the kids breakfast before he left for work today.  Double duty for him.  On days that I am managing in the morning, I do get things done during the day.  I have to take care of the kids and do things for them.  So, the house becomes and issue.  I do manage to get one big thing done each day.  Big things are laundry, dishes, cleaning bathrooms.  I will never be able to clean the whole house in one day any more.  It sucks.  I am suppose to be taking care of my family.  I am home everyday.  I do not work outside the home.  It is my job to do all these things.  Unfortunately, my body just will not let me do those things all in one day.

There are some of you who really do not want to keep reading this paragraph (parents and siblings).  I have said before that I have been sleeping on the couch for several (6) months.  It makes things a little difficult in the "love" department if you know what I mean.  It is now to the point that we actually have to schedule days so I can take my pain meds early enough that I am mostly pain free.  It sucks big time.  It is hard to feel love and loved when we cannot really "be" together.

So, I have all these things were I think I am failing.  It does not help when I am in so much pain everyday.  It has been really hard to be positive about anything. I have wondered what my families life would be like without me.  I know it would be hard to begin with, but would they be happier in the end.

I do have these feelings some times and wonder, but I would never act upon them.  I just could not imagine harming myself.  (I just don't like pain, LOL).  I know I have to be here for my kids, if not physically, then emotionally.  And, Matt is the love of my life, I would never want to be anywhere without him (I think he feels the same).

I just had to put this in writing....maybe to see how stupid it is to feel this way.

18 July 2010

Sure

I am not sure that I have anything to say really.  I feel like I should be writing.  I have not been here for so long.  I am sure there has been so much that has happened since I last wrote.  

It is mid-July and things are going quietly.  Well, not really.  The kids have been busy swimming and hurting themselves.  The swim lessons are going swimmingly (ha ha ha).  The boys are both doing great, really.  Max is nearly swimming on his own.  Well, he can swim by himself as long as he can hold his breath.  It is hard to get him out of the water at times.  There is a spray park at the pool where we do swim lessons.  Max never wants to go in the spray park, but wants to stay in the pool and keep swimming.  Max sliced his knee open one day while we were there.  I actually had to use a steri-strip to hold it together.  Might have used a stitch, but it was the knee and I am sure he would have ripped them open.  So, I bandaged him up and off he went, being Max swimming and playing. 

Ben is having a blast at swim lessons.  He is so small, it is scary for me sometimes.  In the week before he started swim lessons, we made an emergency trip to the dentist.  He ripped the connective tissue between his upper lip and gums.  Turns out that was not a big deal, but he did crack the tooth just above the gums.  The doc was afraid that we might have to take out the tooth.  Good thing is that it did not die so it is still there.  He started swim lessons the next week and started loving it.  Unfortunately for him, several days into swim lessons, he fell off the couch.  When he did that, he dislocated his shoulder.  I managed to pop it back in myself.  Of course, I did not do it on purpose.  I did take him to the doc and he agreed that I had popped it back in.  Given my history of EDS, the doc did not bat an eye at what happened.  Ben got a little sling (I did not know they made them that small).  He sat out for one day of swim lessons, but was glad to get back.  I am being careful with him for now.  There are a few things at swim lessons that I am not letting him do.  I want to make sure that my baby heals a bit before he goes back to the day to day. 

On the way home from the doc with Ben that day and the car broke down.  It was horrible.  Matt and I freaked out and were afraid that we were going to need to buy a new car.  Turns out it was only $530 repair.  

Drugs are kicking in....better go. 

01 July 2010

today

Good Morning world.  We are all up, the sun is shining, and the skies are beautifully blue.  We are going to have a great day, I just know it.  Today is treat day for Max at swim lessons. We get to find out if he will be moving up a level.  I am not sure if he will be doing it or not.

Great news is that Ben is going to be able to start real swim lessons next session.  We have been swimming in the baby pool while Max has been in his lessons.  Ben is jumping off the edge by himself.  I have taught him to float on his back with his ears in the water (with me having a hand on his back).  He can put his face in the water and blow bubbles.  He is almost ready to go totally under the water.  If I dunk him he will not fuss, but he is a little afraid to do it himself.  Anyway, the pool director saw us in the water and decided that it was time to put him in lessons.  I was surprised because when I asked the assistant director last week, she told me he had to be three before they would even consider it.  Not only is he going into real swim lessons, he will be in basic level two to start.  How awesome!!!  He is excited.  He has been wanting to jump off the diving board, even though Max still won't jump on his own.  He will start on the 12th.   I am a little nervous, but that is just the mommy in me.

I am still feeling pretty good.  I have started taking a B-12 tablet each day and I think it is helping a little.  I am still napping.  But, I can wake up in the morning and after nap without feeling groggy.  That is a big bonus.  I do not feel like I have to sleep all the time right now.  It is fabulous.  I am getting more done around the house, which also makes me feel better.  I have actually made real dinners for the last 4 days.  Don't get me wrong, I feed my family every day, but I have been cooking.  No fast food, no meals out of a box.  It has felt great.  We are all sitting down at the dinning room table and eating together.  It is fun to hear the boys tell Matt all about their days.

The evening yesterday was great.  After dinner, we took the boys to Wendy's.  They each got their frostys for reading for the library summer reading program.  I am so proud of them for reading.  Max is reading on his own and Ben wants me to read to him all the time.  After that we all went to the Nature Center and took a walk.  It was so much fun.  I love spending family time.  It was so nice.  I think Matt is wanting to do more (just in case he gets this job and leaves for 5 weeks).  I, also, think that he may want to do more, even if he does not get this job and leave.

I am getting ready for the kids to both go to school this year.  It is only July, but I already have school supply lists.  I am still not sure when school starts.  It is exciting, but sad at the same time.  Max will be starting kindergarten and that means he is growing up.  My first baby is growing up.  Ben starts preschool this year too.  He will go to school 9 to 11 on Mondays and Wednesdays.  What am I going to do with myself?  I am so used to having at least one of them with me all the time.  Max did not start preschool until after Ben was born.  I have spent nearly every day with Ben his whole life.  It will be strange not to have him around.  I am sure that, eventually, I will be happy to have the time and find something to do.  It will also be much needed time to myself, if Matt gets this job.

Wow, I had a number of thoughts today.  I guess the better I feel the more I have to say (maybe because I am doing more).

29 June 2010

Freaked out

I am letting the cat out of the bag a little early, but I am so nervous I am not sure how to feel.  Matt has interviewed for a new job.  It sounds really positive.  The guy who interviewed him called and asked what his availability looks like for July 19th.  Matt said pretty good.  Then found out that he would be going to CT for 5 weeks.

I know that there are lots of single moms out there and lots of Army wives who do this all the time.  I am just scared that something might happen to me.  I have gotten with some close friends to talk to them about support while Matt is gone.  Everyone is being great.  I am feeling better than usual --minus the shoulder.  I am hoping that I stay that way.  School will start while Matt is gone.  I feel a bit sad about that.  Max is starting Kindergarten and Ben is starting preschool.  It is all exciting for the family.

The job is a good one.  It will certainly put our family in a much better place financially.  We would be able to move to Holyoke, CO sooner than we thought.  It will make our lives so much better.  Matt will be missing somethings with the kids, but he will be working from home when he is here.  So, that would give opportunities to see more of the kids things than if he worked 9 -5.  So, while he misses some, he sees more than he would otherwise.  I am not sure how he feels about that.

I am excited for him....it is one of those dream jobs for him.  It is something he really likes and is good at doing.  He will get great experience and if he wanted to move companies later, he would have a great resume'.

I have been super positive the last couple weeks (even with all the minor injuries).  I am hoping that those feelings will continue.  Matt and I have already made a list of things we would like to have done before he leaves so my life will be a bit easier.  I am going to be busy with the boys.  We have next week off of swim lesson and then it is back to 5 days a week for Max and Ben will start Saturday mornings.  Then another week off swim and then they both will be doing Tues/Thurs evenings.  School will be starting in there somewhere too.  It will be busy and I think if we just stay that way things will be good.  My life is about my kids and family.  That is a choice I made and I love it.

I know that I will need some me time still and I will get a few hours each week.  Ben will be in preschool for two hours on Mon/Wed in the AM.  I have decided that I will go to Starbucks and just chill during that time.  I have also talked to some friends about watching the boys for a couple of hours a week, just to let me get a grip on life.  Who knows, I may not need that time.  I may love the new life that we will have.  I know that having to get up every morning and get Max to swim lessons has really helped me get out of my funk.  I can only imagine what it will be like when they are both going to school.

I am scared, but I know that others do it.  I will just need all the positive thoughts I can get to make sure I stay healthy while he is gone.  I may just have to come to the realization that it truly is going to be mind over body.

I CAN DO THIS!!!!!

25 June 2010

Tough week

I have decided over the last month or so that I am going to go for it and enjoy life.  This week was not one of them.  Started out great....Max started swim lessons and loved them.  I even got Ben into the kiddie pool while Max was in his lesson.  And, after swim lessons, the kids get to play at the spray park for no additional charge.  We had so much fun at the beginning of the week.

Wednesday came around and after swim lessons, we went to Walmart.  I made the huge mistake of picking up Max and putting him in the shopping cart.  He is just a little too heavy for me to keep doing that.  I pulled out my shoulder, wrist and two fingers.  Even though I was in pain, I still go my shopping finished.  Just figured if this is the way it is going to be then maybe I will just have to work through pain and accidents.  I iced it, took meds and felt better in the AM....while it seems that my shoulder hurts every evening, at least I can do some things in the AM.

Thursday morning, we were all getting ready for swim lessons.  I was in my room with the door closed, getting dressed, when I heard Ben fussing at the door.  I did not think much about it because he does that when I am in there and he wants me.  Finally, Max opened the door and said, "Blood, Mommy."  I came running out and Ben was bleeding from the mouth.  I finally got it stopped enough to realize that he had ripped the piece of skin between his upper lip and gums.  I know that facial and mouth wounds bleed a lot, but after looking at it, I saw how bad the cut was.  I decided then that we should to the Dentist for an emergency visit.  Turns out that the cut was not a big deal and really nothing to worry about.  BUT, the Dentist wanted x-rays.  After the x-rays, Ben was very good by the way, he was able to pull them up on his computer.  He showed me where Ben had fractured his right front tooth.  The fracture is above the gum line.  Nothing we can do about it right now.  We need to keep an eye on it.  If it abscesses, then we have to go back in and they will have to take the tooth out. There is a chance that it could just die too.  Needless to say, we did not make it to swim lessons that day.

Friday we did make it to swim lessons.  Both of the kids were so happy.   Max did well, but did not jump off the diving bored by himself.  He is getting closer and closer to doing it.  Then everyone went outside to the small pools.  Max's does his lesson in the 3 1/2 foot pool.  He does really well.  Ben and I play in the 1 1/2 foot baby pool.  Ben loves it.  I have even gotten him to put his head under the water.  I was so excited.  After Max got done with his lessons in the big pool, he came and joined us in the little pool.  Somewhere along the way he sliced his knee open.  The life guard did not have a first aid kit (really?).  Finally someone found one after I had been there putting pressure on it for 4 minutes.  I did get the bleeding stopped and it did not look as bad as it had in the beginning.  So, the life guard cleaned it with alcohol and put two band-aids on it.  Max was crying that he still wanted to play in the spray park.....so I told Max we could play until his band-aid fell off.  It did not last long.  When we got in the car, I was still not sure we should not go get stitches.  I decided to patch it up myself.  I went and bought some adhesive strips and neosporin spray.  I got it all cleaned and bandaged.  He was tentative about it this AM, but after naps, he totally forgot about it. 

I have just put them to bed and looking forward to some quiet time with Matt tonight.  I will most likely take some pain meds and drug out for the night.  Matt will be gone for the next two days, so I most likely not take any pain meds.  While they really help to control my pain and I seem to be pretty coherent on them, I am so afraid to take them when it is just me and the boys.  What if something were to happen and I could not drive because of pain meds?  What if I was so out of it that I could not respond properly?  It scares me to be at home on pain meds with the kids by myself.  So, no pain meds for me this weekend.

To end, the week started out great, but ended up not so much.  We are all still here and healthy as we can be. Max is still loving swim lessons, but wants to do them too. (He will starts Auqa tots in July).  Matt has worked hard and is off to a conference for the weekend.  Me, I am still in pain and learning to deal with it.  I am trying not to let it slow me down too much.  I am a bit less energetic and mobile by the evenings, but I love my days.

24 June 2010

boys

  Okay, so it has been awhile since I have been here.  I have been busy with the boys and trying to live a normal life.

My boys are blossoming.  Max has started reading...blows me away....reading before kindergarten.  Ben starts pre-school in August and he cannot wait to go to school.  Max is taking swim lessons everyday.  He loves them and is doing so well.  I am so proud of him.  Ben and I get to wade in the kiddie pool while Max is swimming.  Ben seems to like it until he falls over and goes in face first.  He is working on it though.

Me, I am in constant pain.  Yesterday I made the mistake of picking Max up (he jumps so it is not so hard for me).  I pulled out my shoulder, wrist and two fingers.  Still had to finish shopping.  Manage to do so many things despite the pain.  I am going on the 7th of July for an MRI.  Then it will be back to VA ortho to see what they want to do.

I am afraid to have surgery on my shoulder......There are things that can be complicated about surgery on someone with EDS.

I am feeling very emotional about this all.  

09 June 2010

Forgetting other pain

I don't know who else watches House on Fox.  If you do, remember when House was trying to get off of pills.  He took them for the pain in his leg...so to forget about the pain in his leg, he stabbed his hand.

I feel that way these days....no, I don't mean I want to stab myself in the hand.  I mean that the pain in my shoulder has made me forget about most of my other pains.  The mornings are pretty pain free, but by sleep time, I just want to cry from the pain.  I am sure that it is because I use it so much during the day.  I am careful not to pick heavy things up, but you don't realize how much you use your shoulder until it hurts. 

I am not getting down about.  It is just a part of my life.  I have accepted that pain is something that I am going to have to live with.  I am not freaking out about it or letting it stop my life.  

Despite the afternoon and evening shoulder pain, I have cooked good healthy dinners for the last three nights. No fast food, no junk.  Yummy healthy food.  I am working on having the family eat healthier.  Hoping two things come from this.  First, I am hoping that it will help me and my joints.  Second, I need to make sure that I maintain my weight.  I really would like to loose 5 pounds that I have gained since I was diagnosed.

Well, I am off to play with my boys today.  Cool and yucky outside, but we are going to have fun inside.  

07 June 2010

Lazy?

I have been seeing a therapist for a long time now....just to keep things on an even keel.  It is especially helpful now with this diagnosis.  I have tried to avoid believing this is true and been beating myself up like you would not believe.

Everyday I feel like I am not enough and I do not do enough.  My house is not clean, I have lots of projects to finish and I want to play with my kids more.  When I do not get it all done, usually because of fatigue or pain, I feel like a total failure.  I am suppose to do it all, healthy or not.  I am a stay at home mom and that is my job.  I feel like I don't give back enough.  Am I down right lazy?

After seeing my therapist, I am not as hard on myself.  I feel better about me.  It is okay if everything does not get done everyday.  I am going to choose to do better and not beat myself up when it is not done.  I choose to not do somethings and I don't feel bad about them anymore.  I am not lazy, I am deciding what I am going to do and not do.  I am going to take care of my family, but not feel bad when something does not get done.

05 June 2010

Doctor visit

I went to the Denver VA on Thursday morning.  I finally got to see an orthopedic doctor.  It was just for my shoulder and not my EDS case.  I explained to the doc about my condition and he had never heard of it, big surprise.  He said that he would be looking into it and see if there was something more he could do.

He checked my good shoulder first.  He asked if I was sure that it was not the bad shoulder.  He could not believe the laxity in my joint.  Then he went to the bad shoulder.  He popped it out without even trying.  It completely shocked him and hurt me.  It was immediately popped back in.  As the doc examined my shoulder  further, he told me that he could actually feel the damage to the cartilage in my shoulder.  He ordered an MRI.

The doctor suspects that I will be having surgery on my shoulder before the end of the summer.  Ouch, not looking forward to it.  Really, we will have to wait and see what the MRI shows.

At least someone is listening to me about the symptoms of EDS.  Someday I am going to figure out how to make someone put it all together for me.

Trip to Chicago

I am home from my trip and it went fairly well.  We had a great time.  Baseball game on Friday night....kids had fun....brother took a ball to the chin (6 stitches) pushing Max out of the way.  Saturday we played in the pool all day.  Sunday we all went to the Brookfield Zoo.  We had a great time.  That zoo is huge.  We walked and rode the train.  It was way fun.  By the end of the day we were all exhausted and my shoulder hurt.  I carried a backpack with water and such.  It was dumb on my part.  I put my shoulder out.  I went to the ER on Monday while the boys went on the train with my folks.  Tuesday we played in the pool again.  We all were exhausted when we finally got home on Wednesday.

28 May 2010

At Mom's

In Chicago, visiting Mom.  Yesterday was suppose to be a quiet day.  We did stay home in the AM....the kids were getting restless around 11, so I took them on a short walk.  Then Mom came home and we seemed to go non-stop.  We went to Costco, then the mall, then to grocery, then to Walgreens.  Then I came home and made dinner for everyone, but wait, we were not done.  We went to the huge public library after dinner.  Long day and my feet, knees and back were killing me.  I did take a pain pill......and bought some new Danskos.  I am so tickled about my new shoes.  I was wearing my tennis shoes yesterday, thinking they would be good.  NO,  had so much pain.  So, I bought the Danskos and the best part.................they were on sale for 75% off.  Normally $120, I paid $30.  How awesome is that?  I should be able to handle most of the walking now.  I wore them to the library yesterday and they are like walking on air.

YEAH!  Baseball game and Japanese for dinner.  Not so sure about the Japanese place, we are going to the one where they cook in front of you.   Hope they kids do okay.

25 May 2010

Fear of Flying

Tomorrow I am flying to Chicago with my boys.  I am a little nervous about it.....okay, extremely.

As much as I hate to ask for help, I have asked to have assistance to and from the gate.  Both DIA and Midway airports are big airports.  I am trying to convince myself that it is okay.  I am nervous about having the two boys see me in a wheelchair.  It makes me sad for them to see me.  I cannot even put into words my feelings at this point.  It is just making me upset.

I love my mother, but at this point I am not sure she understands my limitations.  She has so many things she wants me to do.  I tried to explain that I am not able to go at the pace that I used to go.  I have to take things slowly.  I cannot be running around town like I used to.  I try to do one big thing a day, but when the big thing is going to the Brookfield zoo I think I will need a day off after that.  She is used to me being able just to pick up and go do whatever we want.  It is not that way any more.  I am just going to have to explain it to her again and have her see it first hand.

I have not seen her in a 8 months and I have gone down hill really fast since then.  This has been a total roller coaster for me and I am still learning my limitations.  Let's just hope I can make her understand.  I know that she is just being positive and I know that she loves me.  I know that she really wants my boys to have a good time.  My kids know my limitations....

21 May 2010

okay

I had my appointment with my therapist today.  It was really good.  I feel like I have taken a big turn in my life.  I realize that I have been very hard on myself.  I have been a black and white person....either all on or all off.  I am  trying to understand that it is okay to be in the middle.  A little of this and a little of that.  Meaning, I don't have to do it all.  I can clean some, but it is okay to leave some for tomorrow.  I need to enjoy today and play with me kids, but not over due it either.  I have been trying to make sure my boys know that I love them and that I want to be with them.  Nancy says that I am sheltering them a bit too much.  I don't want anything to hurt them or their feelings.  So, as moms, we all try to shelter our kids.  I guess I am just doing it a little too much.

I have a disability that will eventually (hopefully a long time from now) keep me from doing a number of things.  I want to do as much as I can now, but if I do that in the end, I will be seriously disabled quicker.  So, I am trying to find a middle of the road place.  I can do things, but in moderation.  I can do this and I will figure out a middle ground for all of us.  My kids are just going to have to realize that I am happy to play with them and I want to do things with him, but I cannot always be so physical.  I can spend time with them and not always run around and be so active.  What is wrong with sitting on the porch while they play in the yard?  I am still there and still watching and still part of their lives.  I can do that.....

It is a work in progress, but I don't have to be totally on or totally off.

20 May 2010

Sidewalk Chalk and Sunshine


I was a wonderful day.  I did get most of the mess cleaned up, but not all of it.  I decided that after nap time I would go outside with my boys.

We played with bubbles.  It is so much fun to watch them run all over chasing the bubbles.  We have a bubble machine.  It blows a constant stream of bubbles (thanks Granna and Grandpa).

After that got old, we moved onto the sidewalk chalk.  That was fun.  We drew all kinds of things: houses, rainbows, fruit, and much more.  Then it got interesting.  I made the mistake of putting my hand in the chalk and then putting it on Max.  That started it all.  We all started just putting chalk on the ground so we could get it on our hands and mark the other person.  The boys loved it.  We all ended up a bit chalky.  Hand prints, drawing and just plain scribbles. We had a blast.  I am so glad that I got to participate in that moment with my children.

I have to say that having EDS has made me enjoy the little things even more.  It was so much fun to play that way.  Last year I would have been upset with the boys for making a mess and getting so dirty.  Instead, I started it and loved every minute of it.  The kids wash and so does the sidewalk.  What a glorious day.