tuesday tuesday.

Today has been quite a day.  I’m getting this post out late tonight because it is the first chance I’ve had all day to sit.  Tommy took off of work today to go with me to the rheumatologist.  So this morning he and I dropped Jack off at preschool – one of his favorite places – and then headed out Knoxville for my appointment.  The world of rheumatology is new to me.  I know nothing about it but have quickly learned it’s a very busy field.  In October my awesome doctor got me a first available appointment with a rheumatologist – for June.  Until then, it was just pull myself up by my boot straps and muddle through.  In fact, I’ve rather become accustomed to not feeling well.  Not to do a whining post, but I do realize that I haven’t shared too much here about my health issues.  Since so many of you have asked, here is my update. 

An opportunity arose for me to see another rheumatologist in February, and my awesome doctor jumped on it for me.  He and his nurse got me set up, and today was the day.  My appointment went really well, and I am very thankful I was able to see this doctor today.  I am feeling so blessed to start a regimen to help me feel better.  And after all of the blood she ordered today, I’m hoping there will be some more definitive answers. 

 

I went to the hospital to get my blood drawn, and the technician drawing my blood said she had never seen so much blood.  Not exactly what you want to hear.  24 vials of blood later, I was on my way.  She said I was going to need a blood transfusion after wards.  I am thankful that I am feeling really well, even though they did draw a large amount of blood.  I snapped this picture.  [That’s all my blood.] 

blood 

 

 

After all of that, I went by Target to pick up my new prescriptions and then headed out to the Knoxville Moms Blog first Moms Night Out.  It was a nice evening, and I got to meet some lovely women.  It’s been a busy and eventful day!  Now I’m going to go sleep and try to make some more blood 🙂 

 

And also, I’m rooting for snow!  Lots and lots of it!  Let’s hope this storm shifts more and the temps are really cold tomorrow and we get a mass amount.  Fingers crossed 🙂 

16. squeaking by.

Whew, I’m barely getting this one in.  It’s 11:33 pm on the 16th, and I just started typing this post.  It will be short and sweet – minus the sweet part.

 

Today has been a whirlwind of a day.  Still recovering from surgery leaves me bribing and begging my 2 year old to do things.  I’m not supposed to lift anything heavier than a jug of milk, so lifting my 36 pound child is out of the question.  So diaper changes, clothing changes, car seat getting into, and discipline actions are all subject to the will of a two year old.  Awesome.

 

 

He’s actually been great this week though.  That makes it a lot easier.  And I don’t want to totally out him on the interwebs but some serious developments in the potty training world happened last night.  Heres to hoping it’s not an isolated event.

 

 

I had the privilege of spending this afternoon and evening with my family, including my Grandfather.  He is a precious man, and he fiercely loved my Granny – his wife of 62 years and 8 months.  My heart is breaking for him, and I am so inspired by him.  To see that kind of love before your eyes is a rare thing in this world that we live in.  And I’m so proud to be his granddaughter, and am so thankful for the example he and Granny have set for all of us in their marriage.  Thank you for praying for him and for the rest of my family.  And thank you for your prayers for my Granny.  She passed away Tuesday morning.  There is a great hole in our family now.  I’m so thankful for God’s presence and goodness over these past 5 days.

 

 

I want to thank you all so so very much for remembering Gabriel last night.  I was BLOWN AWAY by the love.  That is what hope is.  I wish I could have bottled last night up so I could take a big whiff of it whenever I needed encouragement.  We feel so loved and so blessed to have people who not only haven’t forgotten our baby but also took the time out of their lives to do a kind act for him and us.  So touched.  I’ve got a whole post to write on it, and I can’t wait to share about all of the candles we got to see!

 

 

So until I get that written, here is our picture from last night.

 

 

oct15thwaveoflight

11. small hopes and an update.

This post is getting out late today, but I am happy to just be posting.  Also, consider yourself warned that I may say something ridiculous.  I meant to have a couple of posts written before my surgery that would post automatically, but I only got Thursday’s done.  So today I am writing this as I’m recovering. 

Thank you so much to everyone for praying for me as I had surgery yesterday.  I had a laparoscopic cholecystectomy, and everything went well.  Yesterday, for the most part, is a blur to me, and tomorrow I will probably say the same about today.  I’m in a decent amount of pain, but it’s well-controlled.  And this morning I had oatmeal for breakfast, and for the first time in over a year didn’t feel nauseous afterwards.  I have been looking forward to being able to eat normally again for so long!  I’m hopeful that this keeps up!  

 

This is a bit of a stretch, but that’s really my only tie in to the theme of 31 days of hope – I’ve been hoping to feel better for such a long time.  Holding out hope that this surgery is a positive step in the right direction.  Thank you again for all of the support.  Much love! 

a little bit of everything.

I just wrote a pretty lengthy post, full of deep thought and rather great, if I may say so.  And then I moved the computer, it shut off, and the post is gone.  This is literally one of my least favorite things in the world.  Did that ever happen to anyone else in college?  I got into the habit of copying my work along the way, but I’m a little out of practice now.  This happened to me a couple of weeks ago as I was sending a letter to Target.  Yes, I am in the letter writing business.  I enjoy writing letters with “constructive criticism” to some of my favorite, or very least favorite, places.  I may be an 80 year old disguised in a 20-somethings body.  Once in college I wrote a very thorough letter to Best Buy.  Don’t even get me started on Best Buy.  In my shortest explanation I can tell you that I’m pretty sure hell is like a Best Buy.  Those are my feelings.  The positive though, is that BB sent me a lovely $30 gift card to make up for the years they took off my life.  Thanks Best Buy. 

 

Places like Target and Kroger, I’ve only recently written to, because I want them to be the best they can be, and somehow I feel like my feedback will help them.  I know… I’m awesome.  And by this point, if you’re still reading my blog, then you must know what a dork I am already and love me anyway.  But you see, Target, I have not actually written to because my letter got deleted.  Just like my blog post tonight.  See what I did there?  I came full circle.  Moral of the story – make sure your writing is saved or else you’ll end up typing up old and random stories about writing letters to huge stores that probably don’t care. 

 

Now, what I really was writing about tonight was pretty good, so I’m bummed that it is not only forever lost but that I will never be able to replicate what I said.  The short of it is that I love honesty, openness, and realness.  I’m all about it.  I’m drawn to it.  I am challenged by it.  I strive to live my life that way.  I hate the fake stuff.  I hate pretending everything’s ok.  And I hate a falseness that life is ok when it isn’t.  So I just summed up my last post in way less words, but it was much less eloquent. 

 

This summer has been frustrating for me.  I had anticipated having a “normal” summer.  It’s been anything but that which I find frustrating.  My biggest frustrations come from my health.  I haven’t talked about it too much here for several reasons.  I feel like it’s whiney, and whiners are weiners.  Second, I don’t really want to focus on not feeling well.  It’s a waste of time.  And third, I really don’t want to tarnish my image I’ve portrayed here of being so neat and tidy and having it all together.  Oh wait, that last one isn’t me anyway.  So I didn’t feel well when I was pregnant, and I expected that I would feel much better physically when I wasn’t pregnant any more.  A couple of weeks after I had Gabriel, by the time my body had recovered from that, I started feeling worse physically.  I have had a lot of weird, random, non-specific symptoms.  I swear things are bothering me but they’re all so random and general that it kind of just seems like I’m crazy.  I’ve had a couple of ER visits.  I have seen a cardiologist, and he put me on a medicine for my heart.  It helps but I still feel bad.  A couple of weeks ago my doctor told me that she thought I may have a rare syndrome that affects the autonomic nervous system.  It usually develops after an illness, a virus, a trauma, or a pregnancy.  It is really rare, and there’s nothing that can be done for it besides treating the symptoms.  She is hopeful that it will go away in time.  I am too because it is annoying.  Obviously, I wish that I just felt fine and didn’t have any health issues.  I find this not only obnoxious but also was disheartened that I couldn’t just feel better so that I could be able to do all of the things that I want to do.  But I am more thankful to have something identified.  I was feeling like I was crazy and just making things up, so it is encouraging to me that there is an actual reason for the problems I’ve been having.  And it’s very encouraging that it usually goes away.  So for now I am learning to re-think about everything.  I am thankful for the medicine that keeps my heart steady, and I am learning to embrace this as a season of physical weakness.  I’m hopeful it is a short season. 

 

In addition to those issues that I’ve been having with my health, I have learned that I have scoliosis.  I feel like whoever did my elementary and middle school physicals really dropped the ball on this one.  Apparently, it is pretty rare to make it this far in life and not know that you have moderate scoliosis.  Funny story – about 3 months ago, I was in labor and pretty excited about my upcoming epidural.  Seeing as how I was already dilated 6 centimeters when I got to the hospital, I was pretty ready to get that pain relief going asap.  So the nurse anesthetist was very quick to come into the room as soon as they got me moved to an actual room.  I thought it was going to be a great experience since my epidural with Jack was a piece of cake.  Not the case this time.  It took 3 sticks.  That’s right friends, THREE.  My contractions were less than 2 minutes apart at this point.  It was a fun time, fun time indeed.  So as he is sticking me for, oh I don’t know, either the second or third time, I lost count, he said “So you have a bit of scoliosis, huh?”  To which I replied, “No, I don’t.”  Then after he finally got it in and was cleaning up the blood bath that was my back, he asked me if I did any sports as a youth.  I found this odd and thought he could have picked a much better topic for small talk.  I told him I played basketball and softball.  He asked, “So you weren’t a gymnast?”  In my head I was thinking, “Do I look like a gymnast???”  But I responded by saying only when I was  in elementary school, and I didn’t make it very far.  So he asked, “Did you do any horseback riding?”  Me: “No, I hate horses.”  Him:  “So no sports that would have been rough on your back huh?”  Then his questions made more since.  I told him no and that I’d never had any back problems before and that I didn’t have any trouble whatsoever with my first epidural. 

Turns out that guy was onto something.  My back hurt for weeks and weeks afterwards.  It was really sore from the epidural.  But then it just kept on hurting, and I thought surely my back wouldn’t be sore from an epidural 2 months later.  After a summer of back pain, I decided that I needed to do something to help.  I was pretty concerned about the scoliosis comment shortly after I had Gabriel.  I mentioned the weird experience to my nurse practitioner pal who always takes great care of me at my 2 week check up.  She told me we could look into it if I wanted.  But just her calming nature eased my worries.  [Jenny, if you’re reading this – I have scoliosis, can you believe it??]   Since then I had just brushed off his comment about scoliosis as him not being good at his job [sorry, Mr!], but it turns out I have scoliosis.  And it’s not even mild, it’s moderate.  I went in to my doctor and told her about it and that I have had really bad back pain.  I told her I didn’t think it was anything but that I may need some exercises or something to help get my back stronger so it didn’t hurt so bad.  She thought that was a good idea but wanted to do an X-ray to check my spine.  So I had the X-ray done in the office and while I was sitting there waiting to see if he got a good picture, the tech [who didn’t know why I was having an X-ray] said, “hey do you know you have scoliosis?”  Thanks buddy.  So anyway, to wrap that long story up – a very kind doctor is helping me get set up to see a specialist about my back.  It will be good to get some more detailed information about it and to get a plan to help my back feel better.  It’s been hurting for a long time, but I was pregnant so I thought it was supposed to hurt. 

 

This is not the post you were supposed to get tonight – but it’s the one that didn’t get deleted.  So that is a little bit of everything from me.  Happy Monday! 

a slight set-back.

Recovery was going well, as well as to be expected.  Little man ate and drank a bunch on the day of surgery, but Tuesday and Wednesday he hardly ate a thing and it took all our efforts to get liquids in him.  Wednesday evening the little man came down with a fever, which climbed up to that magic number they said to “call if your child gets this”.  Little man spent an hour and a half straight sitting in his Daddy’s lap watching a movie with us.  This has never happened.  Ever.  So we were worried, but he was tired and we put him to bed.  A few hours later he woke up screaming and I found him sitting in his crib covered in vomit and burning up.  That magic fever number had been hit, so I called the doctor’s office at 12:50 am.  Bless that Dr. who called me back at 1 am.  I know it’s part of his job, but part of your job or not, no one wants to be woken up at 1 am by a freaked out mom.

 

sick boy

 

 

This morning his fever is down to 101.2.  You know it’s a bad day when you’re happy to see a fever get down to 101.  So we’re having a sick day over here.  Lots of cuddling [I’m not complaining], plenty of meds, and not very much drinking of fluids.  But plenty of TRYING to get a certain little boy to drink up.  It’s hard to know whether it’s surgery related or whether the little guy is just that unlucky to catch a virus while recovering from surgery.  Either way, prayers are appreciated!

 

sick day

 

surgery is done.

Thank you for your prayers for our sweet Jack over the last many weeks!  It means so much to us to know we’ve had so many people thinking about him and us and praying on our behalf.  Yesterday Jack had surgery to place new tubes in his ears and he had an adenoidectomy.  The surgeon removed the old tubes that had fallen out, placed the new ones, and took out little man’s adenoids.  And it all went great!  He said he really hopes these tubes stay in longer.  He said the average length of time for them to stay in is 9-15 months, and Jack’s only stayed in for 5 months the first go around.  5 glorious months though!  So he wished us extra luck for tubes that stay put.  We pray for that, too.  He also said that Jack’s adenoids were huge!  He said it should help a lot with nasal congestion, snoring, and ear infections.  He asked us if Jack snored.  Jack snores like an old man.  And he has for as long as I can remember.  He was my little newborn who sawed logs in his sleep.  So loud.  I can’t imagine him not snoring every night.  But I’m so glad it will help him.

 

On to the pictures.  [Warning: you will be so tired of sleepy/surgery baby pictures after this post]

 

 

surgery

Lots of pre-op activity.  But once the happy juice hit, this kid didn’t mind one bit.  He was totally limp in my arms.  And I think he is too precious in this little hospital gown.  I loved it the first time, I loved it the second.  I hope he never has to wear it a 3rd.

 

 

 

surgery2

Happy-juiced-up.

 

 

 

surgery3

 

Post-op in recovery.  This is me saying to Tommy “do you believe this??”  This kid who is always go-go-go was so chilled.  He would open his eyes and they’d flutter shut.  He would say a word in his precious oh-so-hoarse voice and then fall right back asleep.  I think I was just  so surprised because it wasn’t like this after he had just the tubes in May.  But this procedure was, obviously, more complicated than the first time and also required more from anesthesia.  I was just happy he wasn’t on oxygen!  In pre-op the anesthesiologist [who was awesome!] warned us that he could be on oxygen afterwards since he’s had some lung issues recently.  She said sometimes they don’t go quite as smoothly from the breathing tube to room air transition, so don’t be surprised.  Thankfully, Jack did great and didn’t need it!

 

 

 

 

 

 

 

 

 

surgery4

And I enjoyed every moment of snuggling.  Also, their rocking chair was so comfortable!  Must find a chair like that for Baby 2’s room.

 

 

 

surgery5

He was thirsty but sleepiness would win over and that juice would pop out of his mouth every time.  Then his eyes would flutter open and he’d try again.  Sometimes stopping to show us that his finger was a light.

 

 

 

surgery6

Then he woke up and wanted his Dada.  And again, quickly went from this…

 

 

 

surgery7

to this.  And while this may seem like a lot of pictures of the same thing over and over, I have about 2 dozen more on my phone.  I could.not.get.over.it.  And was meanwhile, eating up what the recovery nurse was saying about how Jack would probably sleep a lot and not to wake him if he slept longer than usual.  I was thinking we had a great day of snuggling and cuddling ahead of us!

 

 

surgery9

 

 

He was like that the car ride home, too, so we brought him in and came straight to bed thinking we might all nap together.  Jack had no intentions of napping.  I think he wanted to – maybe? – but couldn’t.  It was like that sleepy child at the hospital disappeared and we had a wild, post-anesthesia, on pain meds, child on our hands.  After talking to my dad [the pharmacist] we concluded that the pain medication had the opposite effect on Jack.  It still seemed to help with his pain, which was most important, but it did not make him sleep.  I’d be out for days with a pill of that stuff… this child on the other hand, it was like we’d given him speed.  It was rough for 1, because I hardly slept at all the night before so I really wanted that nap, and B because he was tired and worn out and loopey and off-balance but just couldn’t sleep.  So he bounced from toy to toy and walked side ways and tried to climb for hours.

 

 

surgery8

This was about 20 minutes after we got home.  He wanted to walk around in my boots.  He was so goofy.

 

 

 

Later he did nap, we all did, for about an hour and a half.  And then he was up and running again.  He did great yesterday.  Not his usual self, of course, but really good considering he’d had surgery.  He also ate A LOT.  Soft foods only.  But he took them down.

 

 

Again, we are so thankful for your support and are so thankful that surgery day has come and gone!

sometimes you just don’t feel good.

Sometimes you just gotta pitch a fit.


In Target.

With new toy in hand.

Snacks galore.

Even your first Icee in the cart with you.

But you just don’t feel good, so you pout and wiggle and put up a fight.

I was frustrated.  I understood he was sick and I felt so bad for him, but I had given him everything I could.  We had just been to the pediatrician, and we had to get the prescription for his antibiotic filled.  We had to so he could start getting better.  But how do you explain that to a 17 month old?

I bought him snacks and drinks and then handed over my Icee to him when that was what he wanted.  He was still unhappy, so we went to play with toys.  He found one he liked, but couldn’t just play with it as it was, so we had to take it out of the box– we had to buy it.  It worked for about 1 minute.

But this is so me.  I think about so many times, so many times, where I have everything I could possibly need and then some, but I’m still grumpy, pitching a fit, for what I think is best for me.  For what I think is freedom.  I think I see the big picture.  I think I know the plan.  But I am like the little one in the shopping cart waiting.  I may not know or understand why I’m waiting, but there’s purpose to it that I just can’t get yet.  And I’m thankful that He keeps me in line, even when I pitch a big, ol’ fit.

Thankful:

34.  Medicine to bring healing to little ears that are infected.

35.  Patience that is often lacking in me, but pours out in abundance from others in my life.  Thankful for the example they set for me and how their patience doesn’t grow weary.

36.  The company of my little buddy.  Even as a grump, he’s still my favorite companion.  I hope I’m still his favorite companion, even when I’m a grump.  [Or 2nd favorite, I’m not gonna pretend daddy isn’t #1]

a reminder.

The day was wrapping up and little man started acting unusual.  Very tired but particularly sensitive.  He cried a lot, which is pretty much the opposite of him.  We gave him his bath and put him to bed with the suspicion that he had come down with something.  Sure enough, when he woke up the next morning he had a cold.  It’s that time of year.

Over the weekend he worsened.  A bad cough and lots of wheezing.  He made us nervous but he was so happy.  We have the happiest child in the world, of that I am convinced.  Monday morning, first thing, we made a doctor’s appointment.  Little man has bronchiolitis and reactive airway disease.  He’s now taking steroids and we’re doing breathing treatments 4 times a day.

I’m sure every parent knows how I feel.  No one likes to see their child struggle, to hurt, to ache.  I want to fix it.  I am pretty good at handling ear infections by now.  I’m used to colds– hate the junk in the nose, makes me so sad for him, but we’ve dealt with them.  But this– this is scary.  It brings back scary moments from the past, and I’m not sure how to process it.  I’ve shared before how Jack was critically ill shortly after he was born.  I’ve shared his story a lot.  It’s a miracle and I pray that I never tire of singing God’s praises in healing Jack.  We never want to forget where he was and where God brought Him.  We never want to be anything but thankful.  Those were hard days, but they taught us a lot, both as people and parents.  I’m not sure where we’d be without those days, without that trial.  I am thankful for it.

This respiratory stuff Jack has now, it hits close to home.  I don’t want to watch him struggle to breathe again.  I don’t want to bring up those memories of early NICU days, those images that I’ll never get out of my head.  But at the same time, I am thankful for the reminder.  Too much time has passed since I’ve thought about the healing work God has done in Jack.  It’s been too long since I really prayed over my child.  Too long since I gave songs of thanksgiving for his health.  Too long since I watched his chest rise and fall with ease, amazed at how smoothly it was all going.  I don’t want to take these things for granted.  So while I hate to watch my baby in pain, struggling, I will remain thankful for this reminder, painful as it may be, and I will expectantly wait for healing of Jack’s lungs.