Sunday, August 26, 2012

Phase Four–Delayed Intensification. Very Hard.

Never in my life have I been pushed and stretched so far to my physical and emotional limits as a mother and care giver as I have been over the past 5 days.  Lincoln started phase four of his treatment and it has not been pretty.  He wants me by his side holding him and with him 24 hours a day, and that’s basically how it’s been.  It seems wrong to complain about that and of course I want to be there for him and with him, but in reality, moms need breaks and when we don’t get them it is hard.  I’ve been amazed at what I’ve been able to do as a parent over the past 7 months– how much I’m able to go through and sacrifice and how willing I am to do it.  He doesn’t feel well and my heart breaks for him and wishes I could take away his pain.

Medications.  He’s back on steroids which he hasn’t been on since Induction Phase over six months ago.  That along with several other drugs.  The steroids main side effect are increased appetite, mood altering and irritability.  His appetite is through the roof.  The boy at an entire chicken broccoli casserole in 3 days all by himself.  It kind of makes nauseous to think about.  Don’t worry, I feed him almost every bite while holding him on my lap.  He doesn’t want to do anything himself.

Words to describe his behavior throughout much of every day.  I hesitate to write this because he is my sweet boy and these words shouldn’t and don’t describe his true self but I also want and honest account of what we went through to look back on.

demanding, inconsolable, screaming, out of control, needy, irrational,  hysterical.

These may sound like typical 3 year old tantrum words, but the difference is the frequency and duration.  Imagine the worst tantrum your child has thrown and then replay it multiple times a day for sometimes hours each time for days in a row. 

Examples of his lack of rational during his episodes.  He’ll scream and demand that he wants me to dump his milk all over the kitchen floor.  When I finally do he insists that I not clean it up.  He wants no diaper on and for me to throw it out the window.  He wants me to hold him and not hold him at the same time.  He wants to twist his sippy cup lid on the wrong direction so that it will spill all over himself. 

Part of me feels like I should just put him in time out and regardless of the drugs it is not acceptable behavior, but I’m honestly afraid he will hurt himself if we put himself in a room by himself.  He is so uncoordinated, especially when he’s so upset that he has no control of his body and I’m scared he will fall and smack his head on something in his hysteria.  The best thing I’ve found is to sit quietly in the room with him, protecting him from himself, until he eventually decides to calm down and usually ends up in my arms asleep.

Refusal to take his Pills.  When he was on steroids before we were able to hide his pills in mashed potatoes and that worked.  For the first few days it worked this time around too, until he chewed up the potatoes the other day, tasted the gross pill and spit them out.  Since then we’ve offered ice cream, chocolate syrup, peanut butter, nothing works.  We’ve tried begging, threatening, bribing, reverse psychology, nothing works. We’ve tried it in drinks and just giving it to him whole – he fights everything.  Last night was the worst.  For probably three hours we tried to get him to take his pill.  It wasn’t until 9:30 at night, at Target, in the toy isle, holding a new letter toy and then taking it away over and over and pretending to leave the store multiple times did he finally swallow his pill…$22.00 and one junky letter toy later.  This morning it only took about an hour.  We took the toy away and talked about how fun it was and tempted him with it and we were able to get him to take the pill that way.

Tender Mercy – Answers to Prayer  Thursday morning was not going well.  Ryan was at work and Lincoln had been basically hysterical from 6am-10am.  I was exhausted from not sleeping much the night before, overwhelmed and depressed, but mostly I was feeling so bad for Sawyer.  I know it’s weird to call a one year old mature, but so often that’s how I feel about him.  I am constantly neglecting him to help and be with Lincoln and most of the time he’s so good about it.  He self plays.  He is happy.  He is independent.  I love him so much.  Every day when I get Sawyer out of his crib Lincoln screams “No Sawyer!  Put him back in his crib” all through breakfast.  Thus was the case Thursday morning and it was just all too much. 

In a moment of desperation and a feeling of the need to vent I texted my sisters something pretty dramatic along the lines of  “Help, Kill me, This is hell”.  Obviously I don’t really feel that way and I’m pretty sure they knew I was being dramatic, but it had been a miserable morning and it seemed like it would help to tell my sisters. 

A few minutes later Wendy called.  She asked how I was and told me how sorry she was.  Right then someone knocked on my door.  I told her I didn’t want to answer it because I had no make-up on, no bra on, was basically a complete mess.  But Wendy told me to answer it and that she’d just been praying for someone to come help me because she couldn’t.  I went to the door and it was my neighbor who I barely know, but who had watched Sawyer for me the day before while I was at the hospital with Lincoln.  She said she’d been thinking about me and just wanted to come see how I was doing.   She wondered if she could take Sawyer for a ride in the wagon around the neighborhood.  Tears filled my eyes and I was overcome.  I told her I had just been on the phone with my sister who had been praying not five minutes before that an angel would come help me.  Sawyer excitedly climbed into the wagon and went for a ride, and I was able to calm Lincoln down.  Sawyer was able to have some fun and get some attention – the very things I had been feeling so guilty and bad about all morning.

Sometimes the lord answers our prayers over time and sometimes he answers them immediately.  This was an immediate answer to prayer that was so powerful and special to me.   I am so grateful for my sister and her love, concern and prayers for me.  I’m grateful for the kindness and love of my neighbor who I hardly know.  Mostly I am grateful for a Heavenly Father who gives us strength, shows his love and awareness, and answers our prayers even in our darkest hours.

Thursday, August 23, 2012

The Grand Tour Part One–Downstairs

Welcome to our home! house (562x427) I have loved decorating our new house.  My Favorite room is definitely the family room.  Probably because it’s all new d├ęcor.  I did the whole thing for right around $500 bucks.  Pretty good if you ask me.  My vision was functional, rustic elegance.  Functional in that I had to have storage and space for toys and play, while still keeping the room nice and elegant. I feel like I succeeded.

Family RoomP1050007 (2) (1280x961)P1050008 (2) (1280x953)

I got the wall art Here through Janey Mac.  I Love it. 

P1040980 (1280x939)P1040982 (1280x956)P1050037 (1280x960)Already bracing myself for the day one of my boys takes a marker or dirty hands to my chair. Everyday it stays clean I am grateful.P1040984 (959x1280)The bins are filled with toys and games. Organized and functional.P1040987 (961x1280)

Got this rocking chair for free and painted it Gray.  Sawyer loves to sit in it.P1040989 (2) (961x1280)Remember this Desk?  Still so proud of myself.P1050012 (2) (971x1280)P1050014 (2) (1280x950)P1050016 (2) (1280x943)KitchenP1050017 (959x1280)P1050019 (1280x961)P1050021 (2) (1280x961)P1050036 (955x1280)

Dining RoomP1050025 (2) (961x1280)P1050046 (961x1280)P1050030 (1280x961)

Front Hall EntranceP1050038 (961x1280)P1050041 (1280x957)P1050042 (1280x961)Main Floor BathroomP1050044 (950x1280)

Upstairs tour is forthcoming.  Come visit us and see it all in person!

Monday, August 20, 2012

Atlantic Beach

Lincoln is between phases in treatment and feeling good right now so we wanted to do something fun on Saturday.  Fun we found!  We hit up Atlantic Beach with our friends Megan and Tanner and had a great time.  I will say it’s much different going with two toddlers and I Ryan and I definitely missed being able to swim and relax without a care in the world.  But it of course was fun to have them with us  too.  They both really liked it overall.  We’re loving living within a few hours of this little get-away.P1040924 (1280x1199)P1040871 (1280x961)P1040879 (1280x961)P1040894 (961x1280)P1040953 (1280x961)P1040900 (1280x961)P1040903 (961x1280)P1040906 (961x1280)P1040923 (1280x856)P1040937 (1280x912)P1040939 (1280x961)

P1040965 (1280x961)Our cute friends are troopers to put up with us and our boys.  Thanks for all the help!

P1040949 (914x1280)P1040955 (905x1280)

Check out them two dermatologist stallions.  Better believe they had the spf pumped up and the hats and glasses on all day.  Such good examples to fellow beach goers.P1040954 (1280x961)

My favorite picture of the day.  How did I get so lucky?P1040958 (959x1280)

Monday, August 13, 2012

Fourth and Final Hospitalization. God Bless Letters.

I’m pretty luck to have extremely supportive, hands on parents who come and stay for weeks and help me until I think I can make it on my own.  After my Dad helped me drive to North Carolina and stayed through Lincoln’s third hospitalization, my mom came for two weeks to help me through Lincoln’s fourth and final hospitalization.  They both had to change and push back their plane tickets to extend there stay because Lincoln kept having delays and I’m just so grateful they were able and willing to do that. 

Another reason my parents rock is because they spoil my kids.  Especially my mom to Lincoln.  Anyone who knows him knows his obsession with words and letters.  *Random side note funny story – Lincoln finds and see letters in everything everywhere.  In the pieces of his cereal, in folds and creases in his shorts, everywhere.  Well the other day I was changing his diaper and I had both of his legs propped up with one arm going across the back of his knees while I wiped his bum with the other hand, and he exclaims, “look mom, an H!”  I got a good laugh out of that one.*  He loves the huge letters on his wall of his name and always wants to play with them.  So my mom bought him the whole alphabet and several repeat letters.  Then she covered them all with scrapbook paper.  Then we found a store right by my house that sold them for, not exaggerating, a third of the cost from where she bought them.  That bugged.  Lincoln loves them and spends all day spelling words all over the house.P1040782 (1280x945)P1040783 (1280x961)P1040785 (1280x961)P1040788 (1280x961)P1040789 (1280x961)

Lincoln’s last hospitalization was by far his worst.  You couldn’t tell from the pictures, but that’s because I only took pictures on his good days.  But the day after he received chemo for 24 hours straight he got really, really sick.  Looking back I feel slightly responsible and guilty that I wasn’t more on top of all the medication he was and wasn’t getting because come to find out the nurses didn’t give him anti-nausea meds after the chemo.  There was a misunderstanding about how much and how long he got it in the past.  Sunday morning he wasn’t acting like himself and wasn’t eating and by the time I got back from church I walked into the hospital room, picked him up and he immediately threw up all over me and sawyer.   I thought they’d been giving him the zofrane, but they hadn’t been.  Then he didn’t eat for about two days.  That was stressful.  I felt so bad for him.  We ended up being there longer than any other hospitalization this phase.  I was so glad to finally come home on Tuesday night.   Yay for Phase three ending!!  This really is a big milestone in his treatment and I’m so glad we’ve made it this far.  Phase four starts Wednesday August 22nd and lasts for 57 days.  After that’s over everything should get much easier and less intense in his treatment.  

Hanging out in the family kitchen.P1040830 (1280x961)P1040832 (961x1280)P1040833 (961x1280)P1040835 (964x1280)P1040846 (961x1280)

Lincoln’s hospital room and his Blessed Letters.P1040849 (1280x961)P1040863 (961x1280)P1040860 (896x1280)P1040851 (1280x961)

I took Grammy to the airport Tuesday morning and it was hard to say goodbye.  I just wish she could live with me forever.  I know that seems weird, but that’s how awesome she is and how much I love her.  Come again soon Grammy.  P1040827 (961x1280)