Tuesday, May 24, 2011

It's the 24th!!

She made it!!!!

Today marks a new record for my baby; its been a whole year without her having to be in the hospital!

Thank you Lord for this blessing that you have bestowed on her.  I am forever grateful!

Hopefully the record will continue to grow and next year we will be celebrating 2 years infection and hospital free!

P.S.  I moved the ticker to the right side of the blog, and it will keep counting there for as long as she remains infection free!

Friday, May 20, 2011

Not again....

I have a good friend with a son just a month younger than Sara.  Like me, she's a single mom.  Her son was diagnosed with Cystic Fibrosis last year at about this time.  I remember how hard that was for her.  Her son was sick all the time, and it took months to get to a diagnosis.  I walked with her every step of the way having already walked the road trying to diagnose Sara's NF.  And when they finally diagnosed him, Sara and I flew to be with them in MN for a weekend.  We just did normal vacation like stuff.  We took the kids to the zoo, to the park, and other places.  I blogged about it at the time, and you can read that post here.  So far his CF has not been an issue for him, and I pray that it remains so for as long as God will allow it.

Recently her son has been having more problems.  He's been having heavy bleeding from his nose, several times a day.  He wakes up in the middle of the night covered in blood.  Its been really hard and so far no doctor has given her any piece of mind as to what might be causing it.  Today she took him to yet another doctor, and this doctor said that dreaded word no parent wants to hear.....cancer!!  She is going to test Jack for Leukemia!

Instantly when I read this on the screen (we're IMing) my emotions well up.  I have to fight back tears.  It reminds me of the day the doctors said that to me.  Sara might have cancer!  It was when we were still searching for a diagnosis.  How could my baby (Sara was only 6 mos. at the time) have cancer?!?  It was one of the scariest moments of my life.  I sobbed in that doctors office not knowing what else to do.  I slept on the floor of Sara's room (not ever really sleeping) just to make sure that she didn't stop breathing or change color.  I struggled to leave her side just to do simple things like shower because I was terrified something would happen until the results came back saying that it wasn't cancer.  And now as I read those words, it all comes flooding back.  The pain, the fear, the anger!  How can this happen again?  And to a child that I would take as my own if something were to happen to my friend!! It makes me want to leave work this instant and go get my daughter, hold her close to me and not ever let go!  I thank God every day that Sara is doing so well, and by Sara standards she is healthy! 

There are no words to ease her fear, and knowing that I've lived it probably won't help her either.  And of course there is always the dreaded waiting game, which is the part going on now.  Waiting for those blood results, that piece of paper that can forever change both their lives.  I just wish there was something I could do.  Some magical words or something I could do.  But that isn't how it works!  No one had those words for me because they don't exist, and it will be the same for her.  All I can hope for now is that God will provide her the strength she needs to get through this.  She is a strong woman, she's survived so much!  And when she finally knows what it is I can do for her to help ease her burden, I will be here waiting.

Tuesday, May 17, 2011

Counting the days...

Sara will be infection (and hospitalization) free for a whole year on May 24th!  That will be a new record, and I'm very excited each and every day that Sara remains healthy.  So excited in fact, that you can see I've added a ticker at the top of the blog to track the number of days Sara has been infection free.

Sara's infections used to dictate everything in our lives.  For 14 months Sara and I lived in the hospital for multiple days (sometimes weeks) of each month.  Life was crazy, and it was hard to think or deal with anything but Sara's failing health.  Finally the tide turned after her urostomy surgery on May 27, 2009.  Since then Sara has only had one infection, which occurred just a few days shy of her 1 year anniversary of her discharge from the hospital after her surgery.

One year will be the new record for Sara, and then each day after that will be a new record again.  She's done so much in the last year, and grown so fast.  Its amazing what being healthy will do!  Hopefully all those infections and hospital stays are behind us for good.

Monday, May 16, 2011

Weekend Nightmares!

So it has been raining off and on here all week long.  We got loads of rain on Sunday and Monday, about 2.5".  For Colorado, that's a lot.  It took us from 40% to 95% of our totally winter precipitation...in just 2 days!  Then it rained again all day on Wednesday...and that's when I smelled it.

There was this horrible smell coming out of the vents every time the heater came on.  I went and checked the filter, and it was pretty dirty...apparently its been a while since I changed it last, oops.  So thinking that was probably what was causing the smell I just used the heater as little as possible, which wasn't too hard since it was nice and warm on Thursday and Friday.  Then Saturday when I went to the store, I bought a new filter.

Saturday it was colder and raining again, so I turned the heater on as soon as the new filter was in.  But a couple hours later, and it still had this horrible smell...kind of like something had died and was rotting in the vents.  At this point, I called my boyfriend to ask him what I should do. 

He says he wants to come over anyway cause he's planning to build a better cover for our plants since its going to be cold and rainy off and on all week.  Once he gets there we start wandering around in my basement to see if it really has nothing to do with my heater like I thought since he can't find a problem.  We go into the spare bedroom and walk over to the far side, and his foot sinks into the carpet and makes this horrible squishing sound.  What the hell?!?!?!  Where is that coming from??? 

Immediately we check the bathroom, and its all good...no leaks.  So since the water is against a wall, we go to the other side of the wall, which is my storage space, and there we find a HUGE puddle.  There's so much water that when you step into the room your foot is surrounded by water and it splashes up on your pants like a puddle!  All the stuff on the floor is soaked as well, not good.  So immediately we unload the room and see if we can find where the water is coming from.  The main water supply to the house comes in here, so we assume its leaking...but its not.  With no idea where it started, its hard to figure out where its coming from.  At that point we just decide to start cleaning up the water and see if that helps us figure out where its coming from and if its even still leaking.

Three hours later, the carpet is damp instead of like a swimming pool...and its 10pm.  I finally get Sara to bed, she's been watching a moving laying in my bed the whole time we're cleaning up the water, and after placing a fan to dry the carpet a little more I go to bed too.  And when I go check on it in the morning, what do I find??  Another puddle!  But this one is smaller, so I have a better idea where the water is coming from.

At this point, I'm way out of my league.  I call my step-dad, and an hour later he shows up and next thing I know he's ripping out carpet and a piece of the wall.  But he finds the leak...and it isn't dripping, its a full on waterfall coming down the wall!!  The water is leaking in around the main water pipe because the foundation is crumbled away.  Not good!!  Here's a pic of the section of wall we had to take out...and all the carpet is gone now too just leaving a cement floor.  You can almost see the waterfall if you look really closely!  (And I took this with my phone, so sorry the pic isn't better.)

I call my boyfriend and ask him if he has some kind of cement mix or something else to seal this with...and ideas would be helpful at this point cause we didn't have any good ones.  He tells me he has a couple things that might work, and he'll gather up some things and be over in a few.  We he gets there, the "boys" start talking about the best way to plug this hole.  After a couple failed attempts, they come up with a plan they think will work...but of course, it means a run to Home Depot. 

I grab the kids, load them in the car, and off we go while the "boys" stay behind and try to keep any more water from coming in.  I get the stuff they want thanks to a very nice man at the store, and get back as quickly as I can.  They jam some plumber's putty around the pipe to slow the water coming in so that the patch has a chance to stick.  It takes a couple tries, but they finally manage to get the water to stop and the patch to stay in place!  My heroes!!!!! 

After the water has stopped, we head back upstairs and I make the kids go play (they've been watching a movie this whole time so that they were out of the way) and put the NASCAR race on while we wait to see if the patch continues to hold.  We check on it a while later, and its still holding tight...and drying!  Thank you God!  After that, we all pitch in to clean up wall and carpet debris and gather up tools.  And once they're both gone, I go back down and do my best to suck up as much water out of the remaining carpet as possible. 

I checked on it again this morning, and its still holding.  The plan at this point is to wait till it dries out, which will take a while since its still raining every other day and cement takes forever to really dry anyway, and then put tar over the top of the patch to really make sure it is water tight.  Then we'll patch the wall back together, but the cement floor will stay.  I have no plans to reinstall carpet in that room...mostly because its a storage space and doesn't need it.

My house still smells, but hopefully once the carpet dries out that will go away too!  It will just take some time since its so wet and humid here.  At this point though, that seems like such a small thing.  But hopefully the worst is over and now its just finishing up the clean up and watching to make sure nothing develops mold while I wait for it all to dry out over the next couple weeks. 

So that was my crazy weekend!  I hope that all of you had a much better one than me. 

Thursday, May 12, 2011

School Conference

Sara had her end of the year conference on Tuesday, and yes, its taken me this long to get around to posting about it.  Sorry!

The teacher showed us some of her work from the beginning, middle, and end of the year.  Of course, Sara has shown tons of progress.  Her math skills are stellar, and she knows all her letters and most of the sounds.  My guess is she'll be starting to read by next school year.  She has another year of preschool ahead; she isn't old enough to start kindergarten yet (even though she's ready).

The teacher did say that Sara's biggest issue was that when she didn't want to do something (or stop doing something) she was really slow.  I know this!  She does it at home all the time, and it makes me crazy!  Some days she has the speed of a cheetah, and other days she moves like a snail.  It has nothing to do with physical pain, its just her trying to control things and assert her independence.  But if that is her worst issue at school, then I'm happy.  Academically she's ahead of her peers, socially right on track, and just loves being there.

So there you have it!  Another great review, and another person telling me my child is too smart for her own good.  I'm so glad she's doing well and enjoys it!  As long as she has a drive to learn new things, she'll do great in life.  Nothing can hold her back!

Wednesday, May 11, 2011

Our Gardening Adventure Continues...

So this last weekend it was suppose to be 80 and sunny both days (and it was), so my plan was to get our seedlings in the ground.  I thought it would be a great way for Sara and I to spend Mother's Day together doing something fun...but that didn't cost me much (or anything).  Well, I ended up having the flu instead.  So much for plan A!

So on to plan B, which was to plant the garden last night.  Sara and I got home a little earlier than normal because she had her parent-teacher conferences, so I had to leave work early.  Sara and I spent a little more than an hour in the garden putting all the plants in neat little rows and make sure we watered them well.  Plan B complete!

After that it was inside for dinner, bath, and bed time.  Of course I had a million things to do having done nothing over the weekend, so at 9pm I finally sit down and when I turn on the TV its the news....and more importantly, the weather!  And what is the guy saying, we're under spring storm warning.  Its going to be cold and wet, it might even snow, and to cover your plants.  Are you kidding me?!?!?  Time to think of plan B, version 2!

I call my boyfriend, who has been super helpful and supportive during this whole gardening adventure.  At this point, it is OUR garden as I see it.  Its just in my yard.  He's put in just as much, and probably more, work than I have.  He's helped me pick the seeds, prep the garden, and answered all my questions when I didn't know what to do.  He's got a much greener thumb than I do.  I ask him what's the best way to cover the plants, and he just says he'll come over and help me out so it doesn't take to long.  It took us about an hour in the dark with flashlights, plastic sheeting, boxes, and pieces of 2x4...and of course it started to rain before we were done.

I meant to take a picture of the little "tent" we made for the garden, but I didn't have time this morning.  I will try to do that tonight and stick it on the blog so that you can all see.  His handy work is really quite impressive...especially since it was dark and wet!

Now I'm just praying that some of the plants will make it through the next 24 to 48 hrs.  I expect to lose some, but hopefully not all of them.  And like my boyfriend said, if they die we'll just buy plants instead of starting again from seeds.  I do have a few seedlings left in my house that didn't fit in the garden, so I have a few replacements.  Hopefully I won't need them...that's the plan anyway!  Got to love Colorado spring weather!

Tuesday, May 10, 2011

Its May...

Well, its May!  So far in Sara's short life this is the month that she has had the most trouble with.  May is the month that the worst things always seem to happen in.  Her worst infection was in May, her biggest/scariest surgery was in May, and so on.

If she can make it through this entire month without being in the hospital, then it will be official.  She will have made it an entire year without any infections or hospitalizations!  The official day (if you need one for your calendar) is May 24th, the day she was discharged last year!  And shortly after that comes the 2 year anniversary of her surgery, May 27th!  That day forever changed our lives, and I will never forget it.

So cross your fingers!  I know I am!

Monday, May 2, 2011

Loving Tic-Tacs!

This weekend my baby acquired a new skill.  Sara can now swallow pills!  I taught her by having her practice using Tic-Tacs.  We didn't have any luck the first time using a straw, so the next day I changed her to a sippy cup so she had to tilt her head back...and like magic she did it the first time like she'd been doing it forever, and several times after that!  No gagging, no coughing, nothing.

Although this isn't a big milestone people keep track of, for our family this is huge.  Sara is very proud of herself.  She'll show anyone who will stand around long enough by swallowing Tic-Tacs.  I think she ate (really swallowed) almost a whole pack this weekend because she was so proud of herself!  And she's really excited because she knows that now she won't have to take icky tasting medicine any more.

I didn't learn this skill until I was in high school, but I also didn't need to take medication every day starting at the age of one so that my body wasn't constantly in pain.  I'm glad she's learned this skill, but at the same time I'm sad that she needs to know it so soon.

But with this change, some things will get easier.  Traveling will become much less of a hassle.  No more coolers and ice packs to keep it cold, no more extra inspection from TSA, and no more planning our weekend around when she needs her meds.  I can just toss the pills in my purse, and off we can go.  Not to mention that the liquid tastes bad, and is really sticky.  I'm so glad to be rid of it finally!