Saturday, March 31, 2012

Ch-ch-ch-changes

I do believe this has been the longest I have ever gone without posting.  It was a good break, a nice chance to clear my head and think about where I am and where I want to go.

Things here have been great.  Gray is doing so, so much better.  It was like a switch turned and his symptoms just sort of melted away.  We will still see a rheumatolgist this summer since autoimmunes can behave that way, but for now I am just happy he is feeling better.

The bathroom remodel is still underway.  It is a slow process, but we are making progress and that is huge.

Work is, well, work.  It can be stressful and overwhelming but I am working hard to manage that and try to  keep work and home as separate as possible.  This can be hard with the work being fluid and emails coming in whenever students send them, but I am trying.

I am also really working on me.  The early years of parenting can be all encompassing and I threw myself into the mom role, and well, now I want to get to know myself again.  I am going out with friends, working on my own health and working to do small things for myself and not feel guilty.  I will say I feel a bit calmer the last few weeks, and I am hoping it gets better.  Last week I bought myself a Kindle Fire, because I wanted one.  I cannot remember the last time I did that, bought something just because I wanted to!  I love it, I can watch movies on it, read, FB, everything.  It sits on the shelf when I am on the treadmill and I can read a book while working out, and it will be helpful with the babies when we are stuck at the doctor's office or one of their siblings events.  Today I am buying a juicer.  I've wanted to add juicing to my life for awhile since I sometimes have a hard time eating.  So today, I am getting it, and then I will start juicing once a day until PT gig is over.  Then I think I will do a 5 day juice fast to get my body on track.

Things are changing, I want to be happier, healthier and I am the only one who can make that happen!

Thursday, March 15, 2012

Updates and Big Plans

So, we followed up with the oncologist yesterday and all his tests came back normal.  We are frustrated that he still feels badly and he is getting the hives, but so thankful that it does not seem to be something serious.  He has been at school all week except yesterday and he seems to be feeling a bit better, so I think we will step back and see how he does and then follow up with the specialists the oncologist recommended.

We have had a mad week.  The husband is finally working on the bathroom he began demolishing over 2 years ago.  I am happy we are moving forward, but frustrated that more has not been done.  It is pure torture to look at the beautiful tile and paint sitting in my room while the bathroom is still a wreck.  Trying to breath and not lose my mind over the bathroom.

My kids have been wild animals lately.  Our schedules are a off with me on Spring Break from PT school and the hubby off this week to work on the bathroom.  After school and the evenings has been pure chaos and it is overwhelming.  Dinner has been late every week, chores are not getting done and the volume and activity level is overbearing.  We need to reign this is ASAP since when this happens it tends to grow and get worse unless we work to get everything back under control and on track.

In an effort to start the days off better, I am going to set my alarm for 5:30 am tomorrow, YIKES!  My oldest daughter gets up early, around 5:45 since she likes the quiet and I usually get up around 6:30 with Brittan and Finn.  By the time I get downstairs, the breakfast craziness is underway, some kids have already messed up my kitchen and I usually cannot even get to my coffee maker to start coffee.  I am setting my alarm and setting up the timer on my coffee maker, I am getting coffee tomorrow morning before 9 am dammit!

OK, off to bed since the crack of dawn is calling my name!

Friday, March 9, 2012

The longest day

Today was long.  Achingly long.

We took Gray to see the oncologist at Children's today.  She asked lots of questions and examined him and believes that his current issues are most likely not related to any form of cancer.  She took a load more blood from my boy and is testing for a million and one things to rule out cancer and try to get us some leads on what is causing his health issues.  We also had to go to the local hospital for xrays of his chest and spine, again to rule out anything cancer related and will follow up with them next week.   The sense of relief we felt from hearing from the oncologist that she did not believe there to be any malignancy is indescribable, and we are just waiting for all the results to come in so we can finally fully exhale.

The visit to the doctor and the hospital took a long, long time, and then we got trapped in Friday traffic, so I managed to walk in the door about five minutes before I need to leave again to take Haven to the school for her MS Talent Show.  The show was great, the kids were amazing, and my goofball kid was funny in her skit she put on with a friend.  The best part of all was walking in to see people we know, seeing Britt run to see her friends and to witness the great support that the kids at our schools give to one another, and that the parents give as well.  It may have taken 8 years, and I may have gone kicking and screaming, but we love our community here and it is our home.  We have friends here.  We have support here.  We have schools that know and love our kids, and that our kids love attending.  I am thankful for the opportunities they have here, and that they feel this is their home.  Today was long, exhausting and emotional, but the love and support of our friends near and far made it so much easier.  Long day, hard day, wonderful day.

Wednesday, March 7, 2012

Is there a breaking point?

I think we all feel like we have a breaking point, a place where you cannot take on one more thing, one more worry, one more fear, one more responsibility.  I feel very close to my breaking point, but know that even if I reach it, I have no choice but to keep going and bear my load because I am the mom and moms don't quit.

We still don't know what is wrong with Grayson and he is getting worse.  He is incredibly pale and his eyes are black. He is getting horrible hives daily and has constant pain in his neck.  He is exhausted most of the time, he wakes tired, has some energy through the morning, is tired by lunch and rests, has a bit of energy in the evening and by dinner he is wiped out.  This was my never stop moving kid and it is sad to see him sit so much.  He is having such a hard time with this and hates being home from school and feeling yucky.  We have had two sets of blood tests, all normal.  We have tested for Lyme, thyroid, arthritis, lupus, liver function, inflammation.  He has had an MRI of his head and neck which were clear.  The doctors are concerned, he came in months ago when we suspected he was a bit anemic, he had been tired and pale.  Over the last few months he has gotten worse and we have not found out why.  We met with his doctor yesterday and she has run out of options and feels we need to see oncology this week to rule out cancer.  I know what she is looking at, lymphoma, and he does have a number of the characteristics of lymphoma and fits in the age and gender for the disease, but right now I can not and will not accept that is what is wrong.  We will see the specialists at Children's Hospital Friday to have him assessed and they will have all of his medical records, so I am confident that they will be able to determine if more testing is needed and if they suspect a lymphoma as well.

Breaking points.  We have had our fair share of health concerns and issues with our kids and I have not reached my point yet.  I have shed tears, been afraid, been angry, but each day I have no choice but to keep moving forward to make sure that all the kids have the best mom and advocate they can have.  We came through Finn's diagnosis well, and while we wish he did not have Cutis Laxa, we were relieved that while he has the rarest form, it is also the mildest.  We hold the same hope for Grayson, that whatever is making him ill will be discovered and will be treated and we will get our boy back.  I am not broken yet.

Saturday, March 3, 2012

It is easy

to complain.  To whine about the crummy parts of the day.  To moan that our back hurts, or the dog peed on the floor, or the dishes aren't done.  It is easy to complain, I know this all too well.

What can be hard is to be thankful, happy, blessed and comfortable with what you have right now.  To be in that moment, to look at what is yours and be so glad to have it, even if the TV is 10 years old and the rug is a bit dingy.

The terrible tornadoes that destroyed so many lives yesterday helped put it in perspective.  Today we took time as a family, in the midst of a busy day out for a kid event over an hour from home to explain what happened. Today we talked about how lucky we are and about what so many families are dealing with.  We explained that people lost their lives.  We showed them pictures of towns that were gone.  Gone.  What a grounding concept.  We talked about how kids just like ours had nothing left- no toys, beds, homes, clothes, books.  How their schools are gone.  Their grocery store.  Their church.  Their friend's houses.  Their cars.  Their world, gone.  Then we talked about how thankful they probably were to simple be alive. and that it would be a long road back to normalcy.  We talked about how lucky we are, that we have so much, that we are safe, that we still have our "stuff" and our home and our comforts.

Then we made a decision.  Tomorrow we are cleaning the house and I am moving children's rooms around.  I have a tremendous amount of clothing that we were planning to sell at a yard sale this summer.  Nice clothes, some even brand new.  They will be packed tomorrow and sent to someone we now who lives near Maryville, IN and is collecting for the families there.  We will also send books.  We will send toys.  We will send shampoo, soap, toothbrushes, toothpaste, razors.  We will send stuffed animals, and crafts for children in shelters and we will send money to the Red Cross.  We will help our fellow man with real action because even though I am tired from our busy day, and my ankle is sore, and my house is a mess, I am lucky to have a house, my children, my life.

Thursday, March 1, 2012

Our crazy life in a nutshell

Nuts.  We are nuts.  Our life is nuts.  Haven is allergic to nuts :)

So we have had Grayson home from school for over a week.  Boy is still busting out in wicked hives, huge giant welts across his body that itch and hurt and are hot.  He also has persistent pain in his neck, he is tired, he is not hungry, he is forgetful and more aggressive, he has lost weight, he has been falling a lot more.  He has had two sets of blood tests and an MRI...nothing.  We are frustrated since he feels so badly, and we cannot send him to school because the hives cannot be controlled and he gets so uncomfortable.  We will see the ped again next week to reassess and we are seeing the Neuro just to see if she thinks it is anything neurological.  Ugh.

I am moving along in my dissertation and it feels really good to be making progress.

We are jostling kids about in the house in an effort to have a more peaceful home.  We have also moved Finn out of our room and in with Teag and my non-sleeper has become a champion sleeper!

Feeding these kids is a major undertaking.  We buy beef by the quarter, 20 lbs of chicken at a time, 50 lbs of flour, 5 lbs of oats at least!  Today I found wild caught shrimp on sale and bought 10 lbs!  When I buy bread, I get 3-5 loaves at a time, and eggs we buy 3-5 dozen.  It is crazy!  I am thankful that I found great resources for good, wholesome, real natural and organic foods when our family was smaller, it has made this so much easier on us.

Tomorrow I need to take Finny to get his first pair of shoes.  The little man is walking really well, and I like to keep shoes off of them as long as possible, but he is starting to want to walk when we are out so I need to cover his toes.  I cannot believe he is almost 15 months old!