Circus Afro

Have you seen the commercial previews for M.adagascar 3.  We have.  When Little M had Hand, Foot and Mouth a couple weeks ago he was so miserable all he did was sit on my lap for 4 days and whimper.  It was awful.  But S.pongebob made it better. :)  Of course this was right before the movie opened so every other commercial was a preview.

We permanently have the Circus Afro song stuck in our heads.  Little M thought it was hilarious.  So when the chance to see the show for free presented itself.  I jumped!

Through the HopeKids group we got tickets to a special screening.  So far our movie experiences with Little M have been disastrous at best.  He's just too little to sit through a movie. Unless it's a movie about cartoon animals dressing up in circus costumes and singing.  He sat through the whole show.  Barely blinked.  Squealed with delight when the circus afro song played. And danced in his seat (that I had to hold down with my leg so he wouldn't get folded in half!).  I watched him the whole show instead of the movie. It was just too precious to look away.

Chalk up another win for HopeKids!  This group is amazing and I'm so glad we were told about them!

Breaking down the numbers

Recently I had to gather all of Little M's medical records to try to get him on disability.  I never really stopped to think about just how often he's been in the hospital or seen by a specialist.  I knew it was a lot but holy cow!  He has nearly 100 hospital, clinic, ER, specialty, therapy, lab visits in two years. How is that even possible?  So I broke it down.  Because I'm a number geek like that.

ER visits: 5
Hospital stays: 8
Well baby check-ups/ weight checks: 9
Sick baby visits: 12
Specialty visits: 21
Therapy appointments: 35
Lab visits (most of these required drawing blood): 9

No wonder I don't have any time off accrued at work!

It's a wonder my little guy doesn't start screaming the second we walk into the pediatrician's office!  At his 2 year well baby check he was as charming as could be all while talking and smiling for Dr. J.  She's just as shocked.

And not to rock the boat or jinx anything, but Little M got a cold the beginning of June.  That makes every month this year.  And for the first 5 we had a hospital visit or stay.  We stayed home this time.  I think he's getting stronger.  And I think the asthma controller meds are helping.

The one thing that I try not to dwell on with all these visits is the cost.  Yes we have insurance.  It's not the greatest, but at least it's something.  We still have co-pays, deductibles and out-of-pocket maximums to meet.  And they all reset every year.  Simply put, it's draining.  Financially, obviously, but emotionally too.  Then throw in an out-of-network ICU stay and, well, shit.  I'd like to use a stronger word there, but I'm trying to not dwell on it again.

I love my boy more than I ever could have imagined.  And knowing what we know now, yes we would still do it all again.  I just wish we could have been more prepared for the financial toll this was going to take.  But hindsight....

So for now, we just keep taking each day one at a time.  I try to remind myself daily that God won't give you more than you can handle.  I just wish he didn't trust me so much!

HopeKids

At Little M's birthday party a friend mentioned the HopeKids organization and told me we needed to get involved.  So I signed us up and found out more info.

It's an organization for families with rock star kids like Little M.  Kids that have different medical conditions and different abilities.  They organize different events and invite these families.  The events are free.  Which is great because when you have a rock star kid, funds tend to be depleated.  It also gives us a chance to meet other kids with the same diagnosis as Little M. 

We happened to sign up just in time for Dream Night at the Zoo.  I already had a good feeling about this group, but once I met the director, I knew they were awesome!

We got to the zoo at about closing time.  The HopeKids group just had to wear a wristband and in we went.  Dinner was provided from Chik.fil.a.  And we got to wander around and look at the animals.  The best part was since it was evening, it was cooler and the animals were more active.

We got to see the new part of the zoo with the new polar bear, brown bears, sea otters, seals, and sea lions.  Little M had a blast!  Mr. Temmie and I did too.

It was a nice little night out for our family.

Big kid has to push his own stroller now.

See what I mean!!!  No more baby face!!

He was certain he didn't like cotton candy.

Captain Blue Beard!



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Playing "I'm gonna get you mama!!"
And I'm working on getting rid of the binki.  But we had Hand Foot and Mouth disease last week so we relapsed a little.



Craftastic!!!

First of all, this is my 100th post!!!  That only took 2 years!!! ;)  Anyway, yea for me and thanks to the 3 of you still reading! :)

Now on to the craftasticalness that was my weekend!!  On Friday I stopped at the local thrift store on a whim.  I've been wanting to get a nice comfy chair to put in Little M's room but I don't want to pay a whole lot.  And since we weren't doing anything that day, why not!!

Well I did get a chair.  But it's not for grown ups!  I found the cutest little arm chair and it's just Little M's size!  Only problem is it had a pink butterfly slip cover.  GROSS!!  But, in a moment of ambition and a feeling of I can totally re-make this!, I bought it.  Plus it was only $10 so I couldn't pass up this deal!

When I got the chair home, I realized that I could easily just re-upholster the whole thing.  I've done that before!  But with a two year old boy, washable is everything!!  So slip cover it was going to have to be.





Before



I consulted Aunt Jen, a.k.a. sewing GURU.  She confirmed that yes, I could just pick apart the butterfly cover and use it as a pattern.  Patterns intimidate me.  But I soldiered on!  Once Little M was down for a nap I picked the whole thing apart and cut out a pattern.  And since Little M opted for the Marathon nap that day, I got to sew about half of it back together before he woke up!

It took me 5 hours start to finish. It's not perfect. But Little M LOVES it!! And the whole thing is washable!!!! Even the cushion cover because I sewed in a zipper for the first time ever in my life!! :)

Memorial Day

My family has never really been the type to visit the cemetary on Memorial Day.  We think of our loved ones and stir up old memories.  But running from cemetary to cemetary to leave flowers by a headstone has never been our thing.

This year was a little different.  Losing Dad is still pretty fresh for all of us.  We all miss him like crazy! So on Sunday night when Aunt Liz asked if we wanted to meet at the cemetary and have pizza and beer next to Dad's grave we said YES!  And then we questioned if you are allowed to drink beer in a cemetary.  So far the answer to that is yes.  But I don't know if that's because you can or because we didn't get caught. ;)

As many of as could met up at Papa's grave.  He still doesn't have a headstone because, DAMN!, they're expensive!  And because of his role as a Deacon he's buried in a special section of the Catholic cemetary and there are certain restrictions and requirements.  Maybe by the end of the year my siblings and I can come up with the funding for Dad.

In the mean time we all had a really nice afternoon eating Dad's favorite kind of pizza and drinking a beer for him.  I don't know if it's the new tradition, but for now it was just what we needed.  And I was SURE Aunt Jen would cry!!  But she didn't!  ;)

The Deuce

My baby is two.  He isn't a baby anymore.  You can tell looking at pictures of him.  He totally lost the baby face.  I'm heartbroken!!!  Where did the time go!  But I'm also thrilled he's growing and thriving so well.

For Little M's big 2 party we decided to go with a construction theme.  Mostly because I saw a cake with that theme and HAD to make it.  And Little M still doesn't have an opinion on what we do so I'm taking advantage while I still can! ;)

Here's a list of what my big kid is up to these days:

• 21 pounds even (almost on the curve!)
• 29 inches tall
• Well baby check up went great, Dr. J thinks he's a rock star, I agree!
• Still running everywhere
• climbing (Lord help my heart!)
• Charming the pants off of everyone he meets
• Following commands/understands what I say when I tell him something
• Was still not talking too much until I asked Dr. J about speech therapy.  Then he yelled "I wanna go bye-bye!!!". Dr. J isn't to worried about his speech. ;)
• Now says: Dada, Daddy, Dog, Maaaaaaaaaaaaaaama (only in a whining tone!), bug, night-night, bye-bye, BOO!, and mine.  I'm pretty sure NO! is up next
• Oh he dropped the F-bomb too.  But only once and we didn't react (at least not in front of him!) so maybe he forgot?? Hope, hope!
• Can throw a temper tantrum like no other!  Complete with banging his head against the wall and then laying down on the floor.  Seriously, WHERE DO THEY LEARN THAT!!!!!
• Has overcome his aversion to sugar. DAMN! He had his first s.lurpee and is now hooked!
  
   
And here's the pic from the big 2 party.  And yes I was accused of being An Overachiever Mom. Just because I may or may not have hand-made every sign and barricade at the party.  ;)





















Again, thank you P.interest!






My birthday boy!









I think he finally gets the concept of opening presents. :)



Avery's Lemonade Stand

A while back I posted a link to a blog about a little girl names Avery.  She has a form of Muscular Dystrophy called SMA type 1.  Her story really touched me.  On April 30th, she passed away.  I was so shocked and saddened, I just felt we HAD to do something.

So I read over her bucket list and noticed "have a lemonade stand" wasn't crossed off.  Little M and I started the ball rolling and on May 11th (Avery's 6 month birthday!) and 12th, we sat in front of Aunt Liz's house and sold lemonade.  Little M totally loved being outside!  He didn't do much in the way of help, other than hold the sign and look adorable.  But all in all we made $325 dollars for SMA research.  And we sent a letter to Avery's parents letting them know how much it meant to us for them to share Avery with everyone.

23 months

Today my baby is 23 months old. I only have one more month until he's 2. In an effort to ease the tugging on my heart as that day grows near I've been referring to Little M as a two year old for a few weeks now. Pretty much since he learned how to throw a temper tantrum. :) Who teaches them that by the way?!?! I sure didn't teach him! And when do I stop counting his age in months? "Your boy is so cute! How old is he?" "Oh he's 196 months old." :D

Here's what my little monkey is up to these days:

• Walking RUNNING everywhere



• Laughing at everything



• New dance moves (I HAVE to record this. He really knows how to wiggle his hips!)



• Feeding himself



• He has all his teeth. Including his one year molars



• Constantly babbling. But does know Dog, Daddy, Mom, Kitty and Keegy



• Recognized our new car when I pulled into the driveway the other night and said "Mom"


• Screeching and screaming just to hear his own voice



• Kicks a soccer ball



• Starting to mimic. If I let out a deep sigh, so will he. :)



• Initiates a game of peek-a-boo



• Whispers



• Understands basic commands and questions. i.e. "come here", "hand me that", "do you want to walk", "are you hungry/thirsty", "No!" (although he ignores this last one.)



• Stacking objects



• Give hugs/snuggles to the dogs and sometimes mom and dad



• Goes to sleep on his own (most of the time)



• Sleeps through the night almost every night



• IS CURRENTLY NOT NEEDING O2 AT BEDTIME!!!!!!!

I still remember the day he was born and getting the phone call that flipped our world completely, like it was yesterday. I remember holding him for the first time when he weighed only 2 pounds and fit in the palm of my hands. I remember his vitals stabilizing while I held him and the nurse "just happening" to get busy while I held him so I got an extra 20 minutes of snuggle time. I remember being on top of the world after meeting him and then sinking so low when we had to leave him behind. I remember sitting in the tiny little closet room the night before he was discharged to us. Not able to sleep because I was so excited. I sat there and just watched him. Listened to him. Memorized him.

In the 21 months since he's been home and the nearly two years he's been alive so much has happened. We've had far too many health scares, a diagnosis we're still in a little denial about but making peace with, and many, many other challenges. I've spent countless hours worrying he won't catch up or meet his developmental milestones. And every.single.time he's just gotten it one day. And every single time I cry. Because I know how special that really is. I don't take one second for granted with this kid. :)

Avery

I stumbled upon this blog the other day. This sweet little girl, Avery, has SMA type 1. SMA is another form of neuro-muscular disease. Only hers is FAR more severe than Little M's.


Her parents are an inspiration. She is a little fighter.


You'll probably need tissues. I did.

http://averycan.blogspot.com

5K number two

I'm still on track to do at least 5 5k's this year.  Numero dos was on 4/14.  I did the Color Dash with Aunt Liz and Keegy.  It was a flat course, two laps around the park.  But it was on a bark trail.  That's like running/walking on soft sand!  OUCH!  At least I opted to leave Little M with Grandma (just getting out the ICU with RSV and all!).  There's no way I could have pushed the stoller on that buisness!  And I did it 1 hour.  I'm really hoping to get my times better, but seeing how I don't really train for these things, it's no surprise I'm staying the same.  At least I'm not getting slower, right??

Easter

Easter is a big deal. It's a very religious holiday for me. I absolutely HATE when people turn it into all about the Easter Bunny and presents! Yes the EB comes to my house. But it's with a small basket and one or two treats and MAYBE a small new toy. That's it! In fact I get more joy from celebrating Holy Week than anticipating a visit from the EB.

This year I spent the first half of Holy Week in the ICU in CA and the second half trying to make up some serious hours at work. All while having a sick baby at home and being sick myself. So I missed Mass on Holy Thursday and Stations of the Cross on Good Friday. I was really sad about that but really there was nothing I could do. I was that much more excited about Easter Sunday Mass. Until about 11:00 P.M. the night before when I realized Little M had NOTHING to wear. Thank goodness for 24-hour big box stores and one outfit in Little M's size left! :)

Easter was wonderful. Mr. Temmie had the morning off so he was able to go to Mass with us. We were able to have a nice lunch together and then he went to work for a few hours while Little M napped and I made a cake.



Thank you P.interest for the cake idea!!



We spent the evening at my sister's house with all our family and even got to take Little M off the O2 while he was awake.  All in all it turned out to be a nice day.

Healing

Little M is getting better. He's back to room air when awake and only 1/4L when sleeping. He's got the spark back in his attitude and has had me in stitches laughing the last few days.

I'm getting better too. I no longer feel like an elephant is sitting on my chest and head.

Now if we could just find a new car. I think that is the last piece of the puzzle and the chaos will be done.

We went car shopping last night. Mr. Temmie is in charge since he's the "car guy". We went to 3 different dealerships and Mr. Temmie test drove several vehicles. I didn't want to deal with getting a car seat in and out, or a toddler getting in and out. So Little M and I stayed behind and walked all over the place. He explored everything he could. By the time we got home he was filthy! But he had fun. :) I was exhausted! I think tonight I'm going to see if Grandma can watch him for a while so we can look some more. I'd really like to get this wrapped up today! That way I can focus on getting the house clean, grocery shopping, and prepping for the 5K I'm registered for on Saturday. :)

Cue circus music...

So much crap has happened in the last two weeks, if it weren't all craptastic it'd be comedic. It all started with the car accident. From here I'm going to bullet point the rest. It's just too much!

• 3/23 car accident


• 3/24-3/30 back and forth on the phone w/CA relatives waiting to see if Grandpa is going to pass away.


• 3/29 Little M's sweat test and then sweating it out waiting for the results


• 3/30 decide to make quick weekend trip to CA to say goodbye to Grandpa


• Get pulled over on Donner's Pass for lead footage


• Notice Little M has a runny nose and cough


• 3/30-3/31 miss turn off in Sacramento and end up about 1 1/2 hours south of our destination


• 3/31 arrive at mother-in-laws house in the middle of the night but can't get Little M to settle and go to sleep.


• Find out Grandpa is being discharged to home hospice, end up spending the day getting MIL's house set up for him to arrive


• Little M's nose is running like a faucet. Requires O2 at night despite being at sea level


• 4/1 Little M wakes up with temp of 102.3 and is extremely congested


• Spend whole day with clingy baby and have to make a drug store run for more M.otrin.


• Miss out on visiting family since Little M slept all day


• 4/2 Rush to pack the car and head home, Little M pukes all over when loading him in the car.


• Make detour to local ER instead of heading home


• Diagnosed with RSV and transferred to bigger hospital with a PICU


• 4/2-4/4 Unexpected PICU stay with round the clock nebs and suction


• 4/4 I wake up with an elephant sitting on my chest and head


• Convince docs to send us home. Leave CA late afternoon


• Little M de-sats going over Donner's Summit. Dropped to 65% on 4L O2. He stabilized once we got back to about 3000 ft. elevation.


• Get migraine from head congestion and dang near puke all over the car.


• Realize that due to de-sat episode we now no longer have enough O2 to get home if we stop for the night.


• Get pulled over for lead footage in a construction zone


• Almost hit 3 deer. Thank goodness their eyes glow in the dark so I saw them!


• Arrived home at almost 4:00 am and had to get up and go to work


• Phone/alarm didn't auto reset time zones, was an hour late


• 4/5 Little M's saturations bounce all over from 70's to 90's. Mr. Temmie almost calls for EMS but Dr. J says she can see him right away.


• Determine pulse/ox machine is on the fritz. Little M is fine


• Establish that I have almost no PTO and have to work 34 hours in 3 days.


• We still haven't had time to find or buy a new car


• We ran out of portable O2 so I had to coordinate babysitters at home (thank everything for family!!


• And now Mr. Temmie is getting sick

I'm beginning to feel like the biggest attention whore, slacker!! I'm sure my boss cringes every time she sees a text from me. I just want to come to work, go home, have dinner with my boys and relax. I want boring. I really think it's someone else's turn. I won't lie, I've lost my sh!t more than a dozen times the last two weeks.

Anyway, it's all done now. By tomorrow things should settle a little. I'm really looking forward to Easter Mass and then dinner with family. Little M is on the mend. I'll get there. So will Mr. Temmie.

I keep trying to remember what my sweet papa always used to say, "A hundred years from now, none of this will matter."

Touched my heart.

With all the drama lately, this was nice to read. And while most of Little M's issues are not related to being a preemie, he still is/was one.

How Preemie Moms are Chosen
By Erma Bombeck

Did you ever wonder how the mothers of premature babies are chosen?
Somehow, I visualize God hovering over Earth, selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger.
"Beth Armstrong, son. Patron Saint, Matthew.
Marjorie Forrest, daughter.Patron Saint, Celia.
Carrie Rutledge, twins. Patron Saint ... give her Gerard. He's used to profanity. "
Finally, he passes a name to an angel and smiles.
"Give her a preemie. "
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a premature baby a mother who knows no laughter? That would be cruel."
"But does she have the patience?" asks the angel.
"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that sense of self and independence so rare and so necessary in a mother. You see, the child I'm going to give her has a world of its own. She has to make it live in her world, and that's not going to be easy."
"But Lord, I don't think she even believes in you."
God smiles. "No matter, I can fix that. This one is perfect. She has just the right amount of selfishness. "
The angel gasps, "Selfishness?! Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't know it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says 'mama' for the first time, she will be witness to a miracle and know it. I will permit her to see clearly the things I see ignorance, cruelty, prejudice and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."
"And what about her Patron Saint?" asks the angel, his pen poised in the air.
God smiles. "A mirror will suffice."

Results

Little M's sweat test results are back. I'm so glad they came back so quickly. And PRAISE THE LORD!!!!!!! He does not have cystic fibrosis!!!

What a relief that is. I feel like I can take a deep breath for the fist time in about a week.

And on top of that great news... Things with the accident seem to be calming down too. We settled with our insurance for the total loss of vehicle. They cut us a check today. Little M's injury claim (or lack there of!) was closed and he was issued a settlement (crazy!!). My worst injury is a bruised muscle in my chest from the seat belt. I'm finally able to move a little better and not AS sore. I still hurt like hell, but it's getting better.

The other driver's insurance is claiming we are 50/50 liable for the accident. My insurance is calling bull sh!t it's more like 70/30. 70 for the other guy, 30 for me. I agree with my insurance of course! So they are going to fight with the other company to get things worked out.

And I'm still going to fight my ticket. How can you cite someone for "failure to yield" when they are in fact YIELDING!?!?!?!

And we still have to make time to see Mr. Temmie's grandpa one more time. He was diagnosed with Mesothelioma and stage 4B Skin Cancer. He doesn't have much time left. Hoping he finds peace and comfort soon.

While we wait....

Last night I was making dinner and Little M was in his high chair having a small snack. He loves him some banana!! So I gave him several slices of banana to hold him over.

As I cooked I was having a conversation with Little M. I asked how his day was, if he'd had fun with his Aunts looking for counter tops, etc. He of course replyed in jibberish since he doesn't really talk yet. But the IDEA of conversation was there so it was all good.

Then I noticed what he was doing. He hit another developmental milestone. I cried the happiest tears. He was STACKING his banana slices. It was four high when I saw it. He gave me the proudest smile as I praised his banana stack.


And then he smashed the whole thing into the tray. Love that kid!!!

Too much.

There is so much going on right now my head is spinning.

• Little M has his sweat test this week.

• I've been on the phone with both car insurance companies trying to sort out the accident.

• I have my own doc appointment to see how my weight loss is going and since I'm there I may as well get these bruises checked out.

• And now Mr. Temmie's grandpa is really sick. He's been admitted to the hospital in CA for pneumonia and an unidentified infection. He also has Mesothelioma and Skin Cancer. We're pulling any spare change we can find to be ready for a trip to CA for the funeral. We just don't know when it will be.

I could really use some quiet about now....

Ouch.

I was in a car accident today. A really bad one. Basically, I was trying to get into the center lane to merge into Westbound traffic and an idiot decided to bypass all the Eastbound traffic by driving in the center lane. He hit me nearly head on. His airbags deployed, mine did not. Both our vehicles are most likely totalled. Little M was in the car with me. He is just fine. I'm beat. to. sh!t. I have a bruise across my chest that looks just like the seatbelt that caused it. Thank God I was wearing it. The other guy got a bloody nose from his airbags. I don't know if there were any other injuries. We're waiting for the insurance to determine percentage of fault since we were both given citations. Mine was for failure to yeild. His was for traveling in the center lane. I'm going to fight mine.

Schweaty

Sweat test is scheduled for the morning of 3/29. Instructions are to have Little M well hydrated and bring lots of warm clothes to dress him in, you know, to make him sweat. We'll get the results a few days later.

Fingers crossed.....

More doctors, more tests, more fear

Back in February, we had another stay in baby jail. While we were there, one of the residents got a wild hair up her hind quarters and read Little M's entire history. She noted that he had elevated liver enzymes back in 2010. WE had seen a GI doc then and it was decided he had a premature liver and more blood work was ordered and a referral to Neurology was made. That's when the DMD was diagnosed. I didn't think anything else of it. Well this resident demanded we have labs drawn to follow up. I should have said no, but what if something really was wrong. Best case, it's a tiny stick for blood and everything comes back fine. Worst case, it's a tiny stick (at 4:00 in the morning!!!) and it comes back not fine. It came back elevated higher than before. Damn it!

So today we had a follow up with the GI doctor we saw before. Shockingly, she remembered us. Or at least his history anyway. She looked over the most recent labs and history. She kept talking about how elevated enzymes are sometime just a side effect of the DMD. She wasn't concerned about the size of his liver at all. It sounded like we were going to get out of an appointment without something new wrong! She even said he doesn't appear to have any liver disease! Horray!!!

Then the other shoe dropped. Because of his elevated enzymes, recurrant respiratory illnesses and elevated CK level, she's concerned he has Cystic Fibrosis. It's been know to happen in kids with DMD. So Little M has to have a sweat chloride test done next week some time.

I'm terrified.

Finding momentum

About 3 years ago I decided I'd had enough with my weight. Mr. Temmie and I joined a gym and we were religious about going 3-4 times a week. Slowly we petered out. But I was still determined to lose weight. I modified my diet a little and I was successful at permanently losing about 15 pounds.

Like many people, my desire to lose weight was fueled in early 2010. Then we found out about Little M. And while my desire was still there, I suddenly had eleventy billion things to do to get ready for a baby and then the actual baby to take care of. And he turned out to be a sick baby on top of everything else. So, need/want to get healthy, yes. Time, NO. But I still managed to not gain back any of the 15 lst pounds.

Then my brother had a heart attack at 40 and my dad died. My brother's heart attack was enough motivation to go to a doc for a check up. Losing my dad sent me into a funk (that I am admittedly still in). I lost about 8 more pounds.

I had my physical and blood work done early this year. My ticker seems to be good, but my blood pressure was high. All my other labs came back normal, but my weight loss was stalled. Working with my doc we found some combinations of medication and diet that we think will help. I'm doing all I can to increase my movement (hello 5k's!) and decrease the garbage food I like to eat.

To date I have lost 32 pounds. I hit a major milestone for myself by crossing back over to a number I haven't seen in nearly 8 years. It's definitely fueled my motivation to keep going. :)

First 5K for 2012

I said I wanted to do at least 5- 5K's this year. Well check off one! Little M, Aunt Liz and I did the Leprechaun Lope today. It was a lot of fun to see everyone dressed up. Next year we need to pull out the big guns to compete with these people as far as dressing up! We also decided we like these themed runs. It's a ton of fun!





The course however was a beast!!! The first 3/4 of the course was up hill and then down hill for the last 1/4. My thighs are still burning!! But we had a great time and we'll be back next year for sure!

Wordless Wednesday

;)

On the mend

Little M is getting better. The best part of him getting bigger and growing up is our trips to baby jail have been getting shorter. Less than 24 hours and we were discharged. Of course the fact that we have done home oxygen and monitoring before helped. See?! The docs at baby jail get it! Why couldn't the "doctor" at the clinic understand my plea. Let us do O2, monitoring and A.lbuterol at home! But nooooo. We had to go to baby jail, in an ambulance no less, only to be told he has Rhinovirus again. The common cold is going to be the death of me I tell ya!

Anyway, all that matters is that my little guy is getting better. He had a follow up with his pedi, Dr. J. I still love her! She agreed with me about everything and has helped set up an action plan so we never have to deal with unnecesary trips to the hospital again. She also explained that other medical professionals see the DMD diagnosis on M's chart and freak out a little. Doesn't make it better or right, but helps me understand a bit I guess.

Oh and the liver enzymes..still elevated. More than last time in fact. Get to follow up with GI again. Still praying it's not serious. Still terrified of getting the answer. You know, if you don't want to know don't ask. Only I didn't ask and I still get to find out.

In the mean time, here is my little trooper in the ambulance and in his hospital gown. The whole ride to baby jail he was waving to the other cars and blowing kisses (well when he wasn't pulling off the oxygen mask or playing with the pulse/ox monitor). The EMT didn't know why I couldn't drive him myself. Me either sir. Me either!

WAIT!!!! There's more I forgot!!! First of all, we were admitted on the one year anniversary of the day we finalized M's adoption. Sad that we couldn't celebrate. Next year we'll do better. But the biggest news?? We have a WALKER!!!!! While M and I waited to be discharged, he decided it was a perfect time to let go of the wall and take off. He looks like a little Frankenst.ein and is so proud of himself. I screamed I was so excited. Now it's a game for him and I'm more than happy to play along. Love my boy so much!!!

Sick again

Little M is sick again. So am I for that matter and Mr. Temmie was last week. It's a cold. But poor Little M has such reactive lungs that any cold usually lands us in baby jail, a.k.a the children's hospital. So here I sit watching the saturation monitor praying he keeps his oxygen level above 90% using as little help as possible. (He's currently at 94% on 1/2 a liter of oxygen)

Sadly though this is the calm after our storm. Getting to this point today/yesterday was terrible. When i noticed Little M having issues it was after 5:00 on a Friday. So i took him to the after hours place associated with our pedi's office. We will never go there again. The staff, including the doctor was rude and condescending. I will be writing a letter to the medical board or whomever I have to. I'm not an idiot when it comes to my child and I won't tolerate being treated like one. And that's all I have to say about that.

I'm also at the point of begging God to not give my baby any more crosses to bare. Enough already!! Now the resident assigned to us is hung up on his elevated liver enzymes from 2010. We followed up with a GI specialist then and we were cleared. Now they want to retest his level and I'm TERRIFIED they'lll find something wrong. Send any prayers you can that his labs come back nornal. Lord please let them be normal!

Alright that's all for now. It's late and the nurse will be in to check vitals soon. Best to get some sleep if/when I can. And sorry if there are a ton of spelling errors. Typing this out on my noo.k.

The Dark Side

I crossed over to the dark side this week. I joined Pin.terest. Addiction doesn't even begin to describe what I'm feeling. And it's true what they say about the dark side. There's cookies.

Reso-what??

I don't do resolutions.

It's just a great way to set myself up for failure! That's not to say I don't buy into the whole new year- new you marketing. I totally do! Yes I will join your gym so I can lose 500 lbs in two weeks and start a new diet to lose 500 more lbs in one day. And I will win the lottery and become debt free all while becoming exceptionally profound and zen like! Hell I spent 45 minutes searching C.raigslist for a treadmill! I guess what it boils down to for me is a starting point to make change.

There are things I would like to do this year. Maybe they will happen, maybe they won't. But I'm going to do my best and that's what matters the most right?

So here's my "To Do" list for 2012:

• make better food choices




• be more active




• start weekly "lesson plans" for Little M (to help with his language development)




• do a 365 project (Well, 366 since it's a leap year)




• organize all my closets




• complete at least 4 or more 5K's




• save up enough PTO to take a couple of REAL vacations this year



• Spend more time with Mr. Temmie. You know like a date night?

That should do it for now. Of course I still need to do all the stuff on the sidebar that I said I would do two years ago. Ah well. It'll get done when it gets done!

2011- a year in review

I decided the best way to catch up is to sum it all up! So here's a month by month re-cap of everything great and not so great in the Temmie household for 2011. Enjoy!

January:

Little M was sick (again) and needed home oxygen. That lasted about a week before he was well enough to ween off. And then things were a little more normal.

January 5th we found out Little M has Duchenne Muscular Dystrophy. By far one of the hardest days of my life. Everyone always says they want a happy, healthy child. We're no different. And looking back, at least for now, I can say one out of two ain't bad! We have the happiest kid I've ever met. Not a day goes by without his smile lighting up the room about a million times. He also doesn't have any signs or symptoms of the DMD. So for now, we know it's there, but we're happily living in denial!
















Little M also tried really hard to perfect eating solid foods (purees). It's a work in progress.... ;)





February:

ADOPTION DAY!!!! February 17th we went to court and finalized Little M's adoption! He is forever ours and his name was legally changed! BEST.DAY.EVER.

We had a few visitors this month too. Aunt Meg and Miss Miss came for Little M's court hearing. I love watching these two play together!



Jersey turned 1 on February 13th!! Now maybe she'll start to calm down a bit...although I doubt it! And I do feel a little bad. When Harley turned 1 I had a huge birthday party for her with my family. But in my defense, at the time, I was sure we were never going to have kids so Harley WAS my kid. :)


March:

March was pretty quiet around our house. We did set up Little M's high chair and try it out.

April:


Because we love Aunt Meg and Miss (and Uncle Joe too!) so much, we can't let too much time go before we need to see them again. This time it was only fair for us to head to the Pacific Northwest! Little M got his first ride on an airplane! He did so good and actually slept most of the way there. Once we got to Oregon, we all had a great time and we even went to the zoo!

Little M participated in his first 5K this month. Technically I did all the work while he napped! This race was to help another family with their adoption costs. So even though is was cold and snowing, Aunt Liz, Aunt Patti, Uncle Chris and cousins Ellie and Ruby all walked for this good cause. Aunt Liz ran it while the rest of us walked. She finished in about 30 minutes and the rest of us finished in 58 minutes and some change.

We also celebrated Little M's first Easter.

May:


This year I got to celebrate my very first Mother's day. It was a crazy busy day but in the end I was with my guys so nothing could bring me down. I realized though, all these years I spent dreading this day, being bitter, I wasted so much time focusing on the negative when I should have focused more on using this day as an excuse to be with family.

Grandma Florance came to visit from California. She came just for Little M's birthday party and she brought his cousin Mylah too. We were so glad they could be here. Especially me! I wouldn't have been able to pull together the party without Grandma here to help watch Little M while I got things ready! :)

Two days before his first birthday (5/17) Little M cut his first tooth. He had been SUPER drooly for weeks and I was sure it would happen any day. Sure enough as I sat on the couch holding M he chomped down on my finger and I felt something sharp. It was a bottom front tooth and soon after the other bottom front tooth came in.

May 19th, 2011 my little miracle baby turned 1! I can't believe he's one. That year went so fast! And he has grown and developed so much in such a short time. I'm so proud to call myself his mom. He's got big things to do in this world and I can't wait to see what they are!

June:


It's been a few months so Aunt Meg and Miss are back again! This time they're here to have some fun at our Parish's annual fundraiser event.

Part of the event is another 5k. Last year Aunt Meg, Miss and I finished in 61 minutes. This year we did it in 59 minutes and some change. Next year I hope to shave a couple more minutes off that time! And so far that's 2 5k's this year. I'm beginning to like this whole 5K business....

July:

Things were getting too comfortable at our house. Little M got sick (again!) and landed us in the hospital, now affectionately known as Baby Jail. Only problem is now he can sit up and has an opinion. Being stuck in a hospital bed for 4 days is not on his agenda and it was very clear he was getting stir crazy in that room. But because of his diagnosis (rhino virus, a.k.a. THE COMMON COLD!!!) he was on something called droplet precaution. That meant anyone coming into our room had to wear hazmat suits (o.k. just gown, gloves and a mask) and he was not allowed out unless he wore a mask. Riiiiiight. Actually, we were able to distract him long enough to get the mask on and then watch him like a hawk to keep it on, and we went for a walk outside. It did us all some good and the next day he was discharged. Paging Dr. Cutie Patootie, Dr. Cutie Patootie please call the operator. ;)

We also had a scare with Grandpa Steve. While making dinner on 7/3 he passed out. With his medical history (heart transplant recipient) this caused a lot of concern for our family. And it took an act of congress to get him to a doctor to find out what was going on...


August:

One of the things Mr. Temmie and I had always talked about doing but never did, was take a camping trip to Lake Powell. I have gone several times with my sister Liz and her family, but it had been close to 15 years since my last trip. So we packed up a rental truck and headed for the desert! It was HOT. And windy. And other than getting greased up with sunscreen, Little M loved it! He decided on this trip that he was done with baby food purees and was only going to eat solid foods from now on. He tried a little bit of everything (except dairy due to allergies) and loved it all. He also found the lake to be quite refreshing and FUN! Mr. Temmie however, not so much a fan of the desert.

Little M also got to go to his first baseball game this month. He had a great time and he especially loved his Snocone!!

Grandpa Steve really wanted to come camping with us. But because he passed out in July, he had to have several doctor visits and tests so he couldn't come. But we called him everyday to let him know what we were doing and how things were going. That's when we found out that his heart was o.k., but he was diagnosed with Stage 3 Lung Cancer. Liz and I were afraid it was either that or emphysema. Now we knew and just had to wait to see what the plan was.

When we got back from camping, Little M started daycare. I was really nervous about this, but it was time. So we found a woman in our neighborhood that was willing to only charge us for the days we need at a reasonable price. I'm not head over heels in love with her, but Little M is cared for so it will do for now.

And my brother had a massive heart attack. Very scary for him and his family. But they got him to the hospital in time and he had several stints placed to help him recover. Talk about a wake up call!

September:

Happy birthday Mr. Temmie!


Have you noticed someone missing? That's right!!! Aunt Meg and Miss Miss are back! This time it's because Miss Miss turned 2 and we needed to have a party! Complete with a princess castle cake and lot's of family. I don't have any pics of the castle cake because Harley decided to have a sample before the party started. >:( Fortunately I was able to carve off the section she enjoyed and patch things up. But I didn't think it was picture worthy!


We also found out the treatment plan for Dad's cancer. Three rounds of chemo and then surgery if still needed.

October:

Since Meg and Joe were here, we decided to play hookie for the day and head to the Nevada border for some fun. We took my parents and sister Liz and the babies. We booked a room for the afternoon so the babies could have a place to nap and also to have access to the pool. I wish I could say it saved us from losing money at the slot machines but it didn't. Well except for Liz who pegged a machine on the way to dinner, said she was going to play it one pull on the way out, and sure as shit won! Not the jackpot by any means, but enough to make the trip worth it for her.

The next day we found out my uncle's partner, Uncle Joe (not the Oregon Joe!) had passed away. He fought a long, hard battle with cancer. We were all sad to hear the news but also relieved that he was no longer in pain.

And it's been a while since I did one, so it was time for another 5K!! This one was so fun! Since it was October and there's so much talk of a Zombie Apocalypse, why not dress up and run! Or walk in my case. We did have the option to participate as humans and get a 2 minute head start. But where's the fun in that?!?! So Marcus and I donned our Zombie face paint and chased the humans. The whole run was to benefit cancer research and having just lost a loved one to cancer and my dad being diagnosed with lung cancer (he also had prostate cancer and melanoma) I thought it was a fun tribute. Once again Liz was running. This time her family joined in too. Best part of the event? Little M and I got our best time yet...48 minutes and some change. Oh yeah!!!


That evening, still in Zombie attire, we headed over to my sister Patti's house for a joint birthday party for her girls. Ellie is 5 and Ruby turned 1. We had a great time telling everyone about the race. And we even got a few more participants for next year. :)


On October 21st. My dad started chemo therapy. It was a long day of waiting around and being hooked up to an IV. But he got through it and all seemed fine. The next day he was still feeling good and even went to the grocery store. By Sunday 10/23 we was starting to get sick. We were told this was normal and usually the 3rd or 4th days are the worst. Things didn't improve and on Wednesday 10/26 he told my mom to take him to the hospital. He was severely dehydrated and hadn't eaten anything since Sunday night. He also hadn't taken any of his anti-rejection medications since Sunday and things weren't looking good. He was admitted to the hospital to treat the dehydration and we were told he'd be home by the weekend. That evening I headed up to see him after I got off work. While on my way I got a call from my mom telling me they had moved Dad to another room because he spiked a fever. When I got to the hospital I found he hadn't been moved yet, but they were in the process of doing so. They had started an antibiotic and were testing for infection. I decided to stay until he was settled in his new room. Dad was in and out. Mostly sleeping. He did wake up every so often and say "You're still here?" to which I smiled and said yes. He had developed sores in his mouth from the chemo and it was very painful for him to talk or swallow. Once he was moved I found out it was to the Special Care Floor. Not quite an ICU, but close enough. I stayed until he was settled and about to go to sleep for the night. I made sure the nurses all had contact info for my mom and then I let Dad know that Liz would be by in the morning to check on him and to call if he needed anything. He nodded. Then I stopped. We are not overly expressive with feelings and emotions with my parents. I don't know why because we are all sorts of huggy, lovey, whatever with our kids. But this night, I stopped and looked at my sweet daddy and said goodnight and told him I loved him. Three hours later (around midnight) my mom called and told me to get to the hospital. He had taken a turn and they weren't sure how much longer he had. We all gathered in his room. Phone calls were made for Meg and Miss to fly out first thing. Our Parish Priest and long time family friend arrived to give my dad Last Rights. We stayed by his side until 5:00 a.m. Then most of us headed home, showered, changed clothes and headed back. I headed to work to stall until Meg arrived. Then I picked her up at the airport and headed to the hospital. She made it in time. Thank God! And then at 10:27 a.m. on 10/27, My dad, Grandpa Steve died. The official cause of death was Sepsis.


November:

Happy Birthday Temmie.

I spent my birthday at the mortuary making sure my dad looked his best in his coffin. He didn't. But that's because my dad wasn't there, just his body was left. My dad is in heaven. I wish I could bring him back. But I can't. So I have to take comfort knowing that he isn't in pain anymore. He's with his buddy Baxter. And he is at peace.

And just to add more stress to an already stressful time, Little M got sick again. We headed to the ER in the middle of the night and were checked into Baby Jail again the week of Thanksgiving. Diagnosis? Yup! A Cold! Three days of albuterol and oxygen treatments and all was well. During Wednesday morning rounds the attending doc asked how much O2 he was on. When I told him none he said you're discharged! Bless him! Little M was happy too. He made his way to the door, waved goodbye and blew kisses (his newest trick!). Basically he told them not to let the door hit them in the arse on the way out.

Thanksgiving day I needed a stress reliever. Good thing I signed up for a 5K!! I left Little M with Uncle Brian for this race. It was just too cold and with the hospital stay I didn't think it was best to have him go. So I walked it alone while Liz ran it. She did awesome of course. I was worried because I heard this was a tough course. It was. but I just pushed on and finished it in 59 minutes. My goal was under an hour and that's what I did! It was awesome! And then I didn't feel guilty eating all the yummy food for dinner that night! And with this last 5K that makes a grand total of 4 5K's this year. Hoping to do more next year!


And no Thanksgiving is complete without Black Friday Shopping! Although I wasn't too fond of the Midnight start this year. But I scored some fabulous deals and got most of my Christmas shopping done!


December:

December 1st is my dad's birthday. It was a hard day. But in his honor we had pizza and beer for dinner. See my dad and our Priest share a birthday. When we were young, Fr. Dave would come over for pizza and beer and celebrate their birthday. So it only seemed fitting for the day. And Liz made sure Fr. Dave wasn't forgotten by taking him some beer and a gift card for pizza.


I hosted my now annual cookie exchange party. This year we added the twist of having and ugly Christmas sweater contest too. It was nice to hang out with a bunch of family and friends, laughing at our ugly attire and eating some REALLY yummy cookies. And AUNT MEG WAS HERE AGAIN!!!!


Rather than sit around and just chat while Meg, Miss and Joe were here we decided to take advantage of some of the fun things to do in this state. We took a nighttime river cruise to see Christmas lights and went to Afternoon Tea at one of the fancy hotels downtown. We also had a grownups night out to a fun little bar and I learned the hard way to eat dinner BEFORE you go out for drinks! ;)

Two days before Christmas, Marcus weened off of oxygen again! YAHOO! I was so glad he was feeling better. He had been on oxygen since the week of Thanksgiving. He did have a minor set back in December and since we had the O2 we were able to avoid baby jail so that was good. But oh to get those tanks out of our house and not have to monitor his breathing was so nice!


Christmas was strange this year. There were moments of sad mixed in with happy. I like to think it was mostly happy. I have an amazing family. We tend to use humor to get through struggle. It works for us. But someone was definately missing.


Santa came to visit too. Little M made out like a bandit! He is soooo spoiled. And Mr. Temmie and I had the best time doing all the spoiling!


And to finish off the year...Mr. Temmie got the stomach flu. One of these years I will have a date for New Year's Eve that doesn't fall asleep by 9:00 p.m. and maybe, just MAYBE, I'll get a New Year's Kiss!! But I'm not holding my breath. :)


I learned a lot this year. Losing a parent is hard. Family will always be there no matter what. I can be really strong when I need to. I can still function after being awake for 48 hours straight. My son is the light of my world and my husband my rock.


I watched my tiny baby boy evolve from an adorable pile of goo into a thriving toddler. He went from barely supporting his own head to sitting, then rolling and finally crawling and cruzing. He is seconds away from walking. He shouldn't even be alive and he is. I can't wait to see what 2012 will bring!