TGIF

I wasn't sure if we'd make it to Friday!

A seems to be feeling better and has more energy.  He's supposed to get the picc line out on Sunday.  I'm hopeful that he'll continue to feel better.

We're supposed to head to Maryland on Monday to visit family.  We go every year and I absolutely love it.  My uncle is a wonderful cook so we always eat very well.  My aunt lives about an hour from Washington D.C. and Baltimore so we take advantage of that.  This year, we're hoping to visit the Smithsonian museums.

Here's hoping for a great trip (with no flight delays ;))

W is 18 months old

I'm a little late on my monthly post...

 

Happy 18 months, W!

I can’t believe you’re a year and a half.  Half way to two.  That seems impossible.

I’m still waiting for you to really start talking.  You haven’t added many new words.  You started saying no… or more like noooo.  Daddy also taught you to say goal in honor of the World Cup.  I actually think you’re just not interested in talking and when you are, you’ll figure it out quickly.

I am continuously amazed by your level of comprehension.  The other day, I received a box in the mail.  You noticed it had a hole and pointed it out.  I told you there was a hole in the box.  You then ran over near our closet and pointed to the hole in the wall.  You also notice when pictures are duplicated in books.  You have one particular book with a toy car on the cover.  You page through until you find the exact same toy car in your book.  You love to help.  You help us clean by getting out the cleaners, wiping down tables, shaking rugs, and sweeping.  Recently, you’ve been helping us pack for our move.  You also help put cans of pop in the refrigerator.  You love picking up shoes and slippers and bringing them to us.  You always insist that we wear them.  You love to be outside and love to run.  You love orange juice, pizza, and French fries.  You also love chasing and being chased by Addie.  You know where your eyes, ears, nose, mouth, tongue, hair, hand, fingers, belly, feet, and toes are.  You’ve started putting the envelope in the basket at church (which is really cute) and you’ve also started having tantrums (not cute).  You love a challenge, but get angry when you can’t accomplish a task.

We found out that you hate swings, which seems odd?  I thought all kids liked swings.  But you love the slide.

This past month, you’ve gone to the park quite a bit, had a play date at the mall, attended “gymnastics” class, visited mom at work, and went to the farmer’s market and library with Nani.

You still get compliments on your red hair wherever we go.

You are our everything and more, little man.

 

 

Tough Times

A is still undergoing IV treatment and still not feeling great.  I can’t speak for his emotional state, but I can say that I’m having a really hard time dealing with this situation.

It’s really depressing coming home from work and seeing A in his pajamas, hasn’t showered, no energy, no motivation.  Part of me blames the hospital.  That seems unfair, but before A was admitted, we were going out to lunch, looking forward to vacation, and living life.  Now, we’re moping around the house and planning tasks around the IV schedule.  It’s just sad.

I was very naïve and thought life would return to normal when A returned from the hospital and that’s just not the case.  My expectations were way too high.  Partly because I never experienced a situation like this before and partly because I was hoping for the best.

I usually get home from a long day of work at 6.  I try to put together a quick dinner, clean up a bit, play with W until his bed time, give him a bath, put on pjs, and rock him to sleep.  I feel like I’m on my own and I never have any down time.  It’s tough.

I just want A to get better.  I want to be excited for plans and upcoming events.  I want my partner back.  Right now, I’m just disheartened.  Maybe I’m overreacting a bit (likely), but I miss my active, upbeat husband.  Please send positive thoughts and prayers our way!

When CF clinic goes horribly wrong

I knew things had been going well.  Too well.  We had so much good news within one week and we're so excited about moving and having renters for our current house.  In my mind, I knew that all that goodness couldn't continue.  I can be a bit pessimistic (or maybe realistic?) and I just had a feeling that bad news was on the way.

A had his usual CF clinic visit last Tuesday (6/17).  He goes to clinic every 3 months.  I always try to go with him, but this time I had a business trip planned for the following day and was trying to catch up on some work.  I knew the clinic visit was not going to go very well because A had been battling a virus for a long time.  His weight was down and he was having a harder time breathing.  I knew all this, but expected that A would be put on a stronger antibiotic and told to eat more and that would be that.  Imagine my shock when I received a text from A saying that his doctor wanted to admit him to the hospital.  At first I didn't believe it.  The news didn't register.  I expected another text saying the doctor was overreacting and that A was on his way home.  So when the next text indicated that A would be heading to the hospital that night, I burst in to tears.

I tried to tell my boss what was going on.  No one at work knows about A's CF, but I wanted to explain that I was leaving the office because A was being admitted to the hospital.  I don't think any of my words made sense, but my boss is wonderful and offered to drive me.  I said it wasn't necessary and headed home as fast as I could.

I waited for A.  He arrived after picking up W.  He grabbed a few essentials and we said our goodbyes.  I think I cried the entire time and the whole situation just didn't seem real.   I realize A is lucky - and I'm lucky he's never been hospitalized the entire time I've known him.  But that also made this hard.  I wasn't expecting it and hadn't experienced it and I didn't know what to do.

I still had a business trip scheduled for Wednesday and I wasn't sure if I should go.  It was only supposed to be overnight and I was scheduled to return home by 5 the next day.  I asked A if I should go and he said it was fine.  We arranged for our parents to care for W and Addie to go to doggy day care.  I felt incredibly guilty about going, but I knew that although A wasn't feeling great, he wasn't totally miserable.  We had just gone out for lunch the day prior.

The business trip was a complete nightmare.  I was delayed going (4 hours) and delayed returning (7 hours).  I totally regret going.  Not because of the 11 hours in delays.  That was awful.  But I hated being away from my family.  I should've been with A and W.  I should have visited A in the hospital.  I should have been with him while he was undergoing tests and procedures.  I feel like I chose work over my family and I'll never do that again.  I also know that if the roles were reversed, I would expect A to stay with me.  I would've been extremely upset had he gone on a business trip.  I'm still mad at myself.

I wasn't happy with the care A received.  His picc line wasn't even inserted until Wednesday evening.  He wasn't given the proper amount of enzymes.  His meals looked horrible.  He didn't receive what he ordered.  I should've been there to advocate and ask questions.

A and I both returned home Thursday night.  Well, technically, I returned Friday morning - at 1:30 am thanks to my horrible delays.  A will have the picc line until Sunday.  He's been administering his own IV treatments every 6 hours.  We've had nurses to the house quite a bit.  Things have been tough on both of us.  Because of the treatments and limited mobility of his arm, A hasn't been able to help with W very much.  I feel like a single mom lately and have mad respect for single parents.  I can't wait for things to return to normal again.  This has definitely been one of the toughest weeks I've experienced (probably A too, but I can't speak for him).  I really hope these iv antibiotics work and A's lung function improves.  This experience has really given me a glimpse at how devastating CF can be.  It really scared me.

Weekend Recap

We had a great weekend!  Friday, we took W for a haircut.  I was nervous because the first one did NOT go well.  Half the salon was helping us distract W.  But this time, we discovered the bowl of Dum Dum suckers.   And W sat through the haircut with his sucker – no problem at all.  Sidenote: I used to be that mom who insisted on no sugar, no juice, organic food, etc.  I’ve relaxed quite a bit.  We have to choose our battles (especially with a child who is super picky).  I’m not saying W gets sugar every day, but every now and then, he gets a treat.

 

Saturday, we went to a cookout that one of A’s colleagues was hosting.  The lady had a large backyard and swing set.  W had an absolute blast going down the slide several times.  AND he slept through the night – over 10 hours.  It was awesome.  His sleep has been awful for the past month and we all needed a good night.

 

Sunday was Father’s Day.  We went to church and Starbucks.  Then came home and A opened his gifts from W and I.  After W’s nap, we went out for Mexican food and then made a trip to the park.  A and I theorized that we had to totally exhaust W in order to get him to sleep through the night and what do you know, it worked again!  I can’t even remember the last time W slept through the night 2 nights in a row.

 

It was a perfect weekend. 

 

In other news, we continue to prepare for our move.  So much paperwork along with appraisals, inspections, etc.  We’ve got a lot going on.  It looks like we have renters for our house so that’s good news!!  Sickness still hasn’t left – it appears that A has a cold yet again. L  I’ve been traveling for work.  I leave again on Wednesday.  Not at all happy about it.  Suffices to say we’ve been incredibly busy, but things have been great (other than the sickness and work travel).

We're Moving!

That's right!  Our closing date isn't until July, but now that we have a signed contract, it's starting to feel real!  The third house we fell in love with turned out to be the charm. :)

The house is right down the street from our current home so we know we love the neighborhood.  It has 4 bedrooms and a back yard and I think it will be just perfect for us.  We're very excited!

My new favorite product for toddlers...

I spent time with a fabulous mom friend over the weekend.  She has her hands full with a one year old and a two year old, but she is amazingly organized.  W and her daughter played at an indoor play place at the mall and then we decided to hit the food court for lunch.  W is picky, but he loves pizza.  So Sbarro it was.  My friend and I grabbed the pizza and found a table.  She then introduced me to disposable placemats.  Maybe I’m behind the times because I had no idea this awesome product existed.  If I put a plate in front of W, it will wind up on the floor within seconds.  Usually he’ll eat food right off his tray or off of a table.  But who knows how often those mall tables are cleaned – yuck.  Enter the amazing disposable placemat.  It sticks to the table and then you just roll it up with all the crumbs and leftover food when done.  Game changer.  She also had disposable bibs, food pouches, and Plum Organics fruit snacks that W loved.  I was feeling pretty inadequate that I had none of these things in my diaper bag.  I also forgot the high chair cover.  Fail.  I ordered the placemats as soon as I got home.  If you eat out with toddlers often, I highly recommend these.  Genius.

Fighting the Plague

I have not been doing a very good job at keeping up with the blog.  We’ve all been fighting viruses.  I was the first to get a cold, but mine was never bad and I felt fine for the most part.  W was diagnosed with an ear infection over a week ago.  He still has a runny nose and mild cough.  He had a cold for a week prior to the ear infection diagnoses so cold symptoms for over 2 weeks now.  A has been fighting a nasty virus for over a week.  He’s been tired, coughing, has no appetite, and no energy.  Not good.  Calls to two doctors haven’t proved very helpful.  One doctor said he could have pneumonia or mono.  Another said virus.  Antibiotics haven’t seemed to help.  Throw in the fact the W has been waking in the night and we’re all just exhausted.

So lately, our days seem more about survival.  Just trying to get through the day.  It’s been rough and I think we’re all feeling a bit defeated on the health front.  BUT A’s last day of school is Friday so he’ll have some time to rest… maybe... if we make it through this week. J

I do have updates to share so stay tuned!