Stronger

You know that saying "What doesn't kill you makes you stronger" well the past month may not have killed me or made me much stronger but I like to think that I am getting wiser.

Ben is finally starting to get on the up swing of how sick he has been. I have been allowing myself to believe that we really are going to move forward and that we will not live in a 'sick world' forever like it feels like we will. I say all of that knowing full well that about 20 minutes ago Ben had the privilege of jumping out of his chair and loosing his entire lunch in the bathroom. I am praying that his new onset of vomit is not an indicator of something more serious on its way in. For heavens sake he just got off of daytime oxygen yesterday! I need a break and a chance for my stomach to not be in such huge knots that I feel barely functional. The anxiety of never knowing if even the little things are something to worry about really sucks! I feel like an overprotective, hypochondriac parent of a very large preemie! :-)

So despite some of the challenges of the last few weeks we have also had some pretty fun moments! I have started meeting with a counselor (thank goodness!) and the kids are being amazing! We are starting to figure out how to better get the girls involved in some of the regular household chores and they are adapting to it very well!

 I took a day off last week and it was amazing! I had my mom take all three kids on Wednesday morning and she kept them until Thursday morning when she dropped Eliza off at school! It was so amazing to be able to take some time for me to recharge my own needs! I got my hair and toes done then went shopping with Mallory and Gavin! After shopping I went out to dinner with my very amazing and handsome husband! We went to Cheesecake factory which was of course amazing and then enjoyed the rest of the evening just hanging out at home and sleeping in in the morning! I cannot remember the last time I didn't have little feet waking me up between 6-7 am so it was a real treat to get that extra rest even if my body woke up that early anyway!

Friday the kids and I spent the day in Loveland hanging out with Grandma Waite! I loved every minute of it, my mom is amazing! We found a really cute rocking airplane that I bought for Grandma Merritt and then Parker fell madly in love with it and so I ask if we could keep it... She was very sweet and agreed! Thanks Grandma!

Saturday it snowed... a lot! I went shopping with a friend from church and Ben kept the girls while we were gone. The drive into the mall was tense but coming home the roads were just wet! Ah, the joys of living in Colorado! After shopping we took the kids sledding. It's the only time we went this whole year partly due to the lack of snow and partly due to my lack of desire to bundle them all up! Parker thought it was some kind of torture, He cried the whole time. Alayna I forced down the hill twice and also whined and cried the whole time. Eliza on the other hand ran up and down that hill tons and then was sad when Mommy couldn't take anymore screaming from her siblings so we went home!


Parker has taken his first independent steps!! He did it at the Waite's house and we were so so excited! He doesn't actually walk yet because he is just too nervous but he does take anywhere from 3-6 steps to get between things. Crawling is still much faster for him and he lacks the desire to really walk much yet.  I have my fingers crossed that he will hit is first birthday in a few weeks and then will just take off running so I can finally start letting him outside to play with the girls without him coming back in having destroyed another pair of pants from crawling on cement! As I type that it does occur to me that he is a boy and this development of walking is not likely to change his current ability to mutilate clothing but its ok, I'll keep the delusion for now!

Eliza is starting to pick up on some more sight words! Its exciting to see her so excited about reading! I really need to get them in doing the summer reading program at the library this year since we failed to do that last year with everything else! I think they will love it and it will help keep me motivated to read a few extra books with the kids!

Alayna is 3. We can tell. Sometimes she is cool as a cucumber and other times she is just a little ball of fire and I'm not sure where such spunk comes from! She is the best little helper and always willing and happy to help. She has been going through a HUGE growth spurt the last few weeks and man alive we cannot keep her full or keep her blood sugars up for anything! I have myself a little grazer, she just eats non-stop all day long and that seems to be the best cure for fighting the low blood sugars that cause such incredible melt downs from her. The only struggle with it is that it is hard to convince her to eat enough at dinner to make it through the night. Good thing we have done this before and I know that she will start sleeping past 5 am again in the future!

Now for the pictures!

 I let the girls play with my phone during our daily trips to the doctors office aren't Alayna's toes so cute in her glass slippers!

 sick daddy and sleeping baby boy... LOVE this, even in terrible lighting there is nothing more precious than your two boys together!

 Beautiful Flowers from Grandma Merritt the week everyone was so so sick!

 trying out Retred for the first time! Wahoo, he loved it!

 swinging with your sister at the park is not nearly as fun as Grandma's horse!

 sexy pose, Ben caught it even though I was just trying to be silly! This was on my 'day off' as we headed out on our date!

 Parker loving his airplane!

 see that yellow in his mouth... That's a full size super ball (bouncy ball) the face is not that it is in his apparently huge mouth, it's because just before I snapped the picture I tried to take it out and he was TICKED!

 Buddies! (that's Gavin flying and Parker directing traffic)

 loving this little girls hair! it's growing and getting thicker all the time!

 he is either helping him or trying to steal his bottle. Stinker.

 sledding... trying to make it more fun. it was not.

 At least one of the kids had a good time!

Caring Bridge Copy

This is just a copy/paste of what I posted in caringbridge a few weeks ago because I want to keep that post in the family 'journal' that I turn the blog into so if you already read this please ignore the rest!

I do not want this to strictly be a place that I whine and complain about the things that are difficult in this process because we have been so richly blessed in this entire journey!  But today is one of those days when I am just tired. Tired of everyone being sick, tired of working so hard to find that balance between everything that needs doing and the things that I should do to keep myself sane and functional. 

The past week and a half have been exceptionally difficult health wise in this house. I really dislike people that all they ever do on public media (such as facebook) is complain about all their health problems. I want to smack them and tell them to man up a little but then I have weeks like this where all I want to do is complain to the whole wide world about how much it sucks when everyone gets sick in your house. 

Maybe I just feel a little more justified because of my situation and the obvious difficulty of it not only to my own view but also to the eye of the onlooker. Or maybe it really has just been an off week and I just need to vent. I first of all need to apologize for the horribly random train of thought here. If it makes no sense don't worry about it I am sure that somewhere in my head all the pieces fit together. 

My reason for complaint:

1. Ben got pneumonia. Then spent 4 days in the hospital which leaves me in a terrible spot of not knowing where I am more needed or where I should be at any given moment.

2. When Ben goes into the hospital it really messes with the kids who can feel mommy's stress and they don't understand their own confusion well enough to talk about it. 

3. Eliza has a nasty cold accompanied by a lovely cough.

4. Alayna got pneumonia.

5. Parker has bronchitis and an ear infection. 

6. Fevers make my kids needy! and cuddly

7. I love love love to cuddle my babies... but I have limited lap space and none of them understand why they can't all fit on my little lap!

8. coughs. Coughs are extremely annoying. I listen to them 24/7

9. Nebulizers. Parker and Alayna are both on one. They both fight and scream and cry about doing it every.single.time.

10. Ben's cough is getting worse. 

Now it has been a few days since I started this particular post. And everything seems to still be in a downward spiral for Ben but at least we seem to be on a bit of an up swing with the kids. 

Ben is back in the hospital. His pneumonia is not gone in fact it has made itself a little home in there and is throwing its junk all over the place. Ben's appointment this week was great because he walked in with a cough, and oxygen levels at 85%. They promptly (I mean right that minute before doing anything else) put him on oxygen to get his levels back into the 90's and then they promptly admitted him to the hospital. At this point in the day my mood went from ok to functioning on the minimum levels but getting what needed to be done, done. 

Yesterday they did a lung biopsy on Ben which has left him in a lot of pain and incredibly uncomfortable. It's hard enough to breath without the added pain of having your lungs scoped and parts of them clipped out. Poor guy. The doctors say that he probably has a bubble between his lungs and ribs from the biopsy and that is why it hurts. They will do an x-ray today to see how big said bubble is and if it is large enough they will insert a catheter between his ribs to release the air and help the pain. If it is small they will just wait and let his body absorb it with some time. He is still on oxygen and the results from the biopsy will take about a week to get final results from. As of this morning they have gotten all negative test results from the initial cultures they ran on his lungs but we are hoping to get some kind of news sooner than later so we can start treating him and getting him better!

You would think that with as many times as Ben has been in the hospital in the past year that it would start to not take such an emotional toll on you to have to go back yet again. But so far it seems to just get harder and harder to have to send him back. I feel so emotionally and physically drained I am not sure how I keep on functioning at all. But somehow the Lord provides me with the strength needed to keep going. To somehow stay healthy myself in a house full of sick people. To manage all the different needs of a house at any given moment. And most importantly he gives me the strength and peace that I need to get at least a few hours of sleep each night. We are blessed and loved even in our hard times and this too shall pass becoming a thing we look back on with wonder of how we ever survived. We will Survive. now for your viewing pleasure this is my theme song:

http://www.youtube.com/watch?v=ihGCj5mfCk8 

Random thoughts and Updates

please pardon the poor quality photos. Cell phones are amazing!

 new living room wall

 new hallway wall! (Thanks Brandi Ginn Photography for the amazing photos!)

 Parker LOVES avacados

 Freddy's lunch and frozen custard for celebration of Daddy's 100 Days!

 Alayna's favorite tv watching position...

 Mommy and kids had a day of fun playing with the phone camera so these are just some silly shots from a day full of laughing and giggling!

 favorite moments in life: watching all three of your kids huddled around a toy happily playing together. jammies, bed head and toys! It's a good morning!

 Ben's thumb nails fell off. They must have died back at transplant and they are now long enough that they are all falling off one at a time. The nail under it is very soft and kind of useless.

 sticky fake nails... 1 hour of fun before they fell off! but it was a fun game!

 Colorado finally got some snow! Desperately needed snow. The girls begged to go out in it, it was a Sunday and church got canceled due to icy roads etc so they got to play. It lasted 10 min because of the wind and blowing snow but they loved it!

It has been far too long since the last time I wrote a post on our family blog. You would think that I should be writing so much more often as a coping method with how our lives have changed so drastically over the last few months but instead I have managed to not record any of the last two months in the family blog. Because of this I apologize to my children if they are ever reading these in the future wondering what it was like for mom during this incredibly difficult time of life. I am sorry for not writing it all down. I am sure there even may come a time that I wish I had a record of it for my own reading pleasure but alas I cannot go back and redo it so I will pick up again and strive to do better.

These last two months have been incredibly difficult. They have also been filled with lots of joy and excitement as well its just that at this very moment it kind of feels like the hard stuff overpowers the good stuff. I have a bit of a sour attitude at the moment so forgive the slightly raw emotion.

Ben has been improving and getting stronger it really was starting to feel like we were on the up swing and that everything was headed in the right direction that we truly were getting closer to the point where we would be able to mostly put some of this cancer stuff behind us. I wish that it would have stayed like that. It's hard when things drastically change and suddenly things are not doing as well as you thought. We were suppose to be transitioning back to Ben's regular oncologist in Longmont but then his liver kept struggling so we were going to do an every other week kind of thing. Well that was promptly followed with some mystery fevers that we discovered came from one of his medications. In the end after going off of that medication and proving that it was the source for the fevers they put him back on it because it is the lesser of two evils (one hurts his liver and the other causes fevers). Then about a week after that Ben got a cough. No big deal right? WRONG with someone with an immune system it would be no big deal but he doesn't have one so he started running really high fevers (104+) so after running more blood cultures and such they figured out that he has strep numo which is a blood infection that also causes pneumonia. He of course has both. Poor guy. When we went into the doctor to do his first dose of antibiotics they took his temp and it registered at 106 then 104.9 a minute later. It was enough that they promptly admitted him to the hospital. In process we discovered that his antibiotic gives him hives. They are continuing to use it anyway because the hives are random and don't seem to bother him too much. He spent about 3-4 days in the hospital before they got results back saying that the blood infection was gone and so was the markers for the strep numo which makes the pneumonia worse and worse. We are thrilled to have daddy home but he is still really sick. He still has pneumonia and feels miserable and coughs a lot, can't hardly ever catch his breath and just feels icky all over. He is somewhere torn between wanting to be in the hospital and wanting to be home. Poor guy. I am praying that the antibiotics that he will be on for the next 12 days will be sufficient to get him back up and going again.

Sarah: I am doing well. Staying healthy and sticking with the usual roles at home of mom, maid, nurse, taxi, etc. I went to a "Favorite Things Exchange" last weekend and that was tons of fun! It was great to sit and enjoy so many wonderful women that are my friends and laugh for hours! Plus I got to snuggle Angela Ashby's brand new baby girl almost the whole time which was incredible! I just love newborns they really make everything in the world seem right and perfect! I have also been working on a few little projects around the house. I am trying to purge some stuff and have gotten rid of tons of stuff in an effort to make it feel like we can fit a little better into our current house because we are busting at the seams from the past 5 years of junk collection! I also redecorated the wall in the hallway and the wall in the living room. I am still in process of making new curtains for the living room as well but I am loving the end result of all of the hard work! My next project will be my bedroom above my bed but first I really have to finish the curtains because no curtains makes my living room look very tacky!

Eliza: what a little ball of fire! I don't know exactly when it happened but sometime in the last few weeks Eliza went from being a little toddler to being a big kid. The kind that is super fun to talk to and is bursting with things to say. She is a little motor mouth it just runs and runs sometimes its hard to keep up with her train of thought because it seems to jump from one subject to the next oh so very quickly. She has a genuine thirst for knowledge and has become very excited about new things she can learn and do! I love seeing how proud she is and how proud I am when she accomplishes new things she has been working on! She is trying so hard to learn to read and it really getting her sounds mastered she is also doing incredibly well with math! She does some addition and subtraction and I honestly sit and marvel at everything she absorbs in school and at home. Eliza is very aware of her surroundings and seems to understand what is going on with dad the best of all the kids but I think that is age related. She has such a sweet and tender mothering instinct and is constantly being the second mommy to her sibling. We are also exploring some boundaries with mom again which makes me crazy but it is part of learning I guess! She is excited beyond words to go to kindergarten next year so we talk about going to a new big school on a regular basis!

Alayna: What a little joy! She is my little snuggle bug. She always knows when mommy needs a little extra loving because she will randomly just come curl up in your lap and just sit with you. Alayna has developed a little bit of a stutter and sometimes struggles to get out a full thought before moving onto the next one in her head its kind of cute! She has also been going through a huge growth spurt recently and has been having really miserable leg aches because of it. It breaks my heart when she gets them because it just puts the poor girl into hysterical tears of pain! She has also recently become very opinionated about what she wears every day. It usually has to be something filly and girly. The best ones are fancy dresses that spin and twirl with her while she dances! Dress up and any game Eliza wants to play are her favorite and she can always make Parker happy no matter what his mood might be like. Alayna is the perfect middle child because she gets to be best friends with both Eliza and Parker! Alayna reminds us on a regular basis that she is 3. She likes to test my tolerance level for tantrums and then pulls the classic 3 year old stunt where they make you crazy and turn right around and make you laugh and love her to bits! She has the most contagious laugh and best little smile when she gives you those puppy dog eyes with her daddy's beautiful eyes it melts your heart and I promise it will be a struggle to stick to your guns on whatever you just said! She is also the most grateful kid I have ever met! She gets so excited about the little things and makes sure to make a big deal of thanking you for even the little things! I  love those moments that she tells me I'm the BEST mom! I will have to remember those someday when she may not think that anymore! Alayna seems to struggle with daddy's stuff the most. She misses him like crazy whenever he has to go to the hospital and doesn't seem to understand why he has to go. She also gets the most excited and relieved to know that daddy is going to come home. She sure loves her dad!

Parker: What a busy busy little dude! He is hands down my most inquisitive child he crawls all over the house and gets into everything. He is obsessed with all things electronic and really strives to figure out why things work. He often makes his way around the house pointing at things with one little finger saying "isit" I finally started just answering him and telling him what things are and that seems to satisfy him completely he moves on to ask you what something else is moments later! So so curious. He loves outlets he trys to plug things in and unplugs anything he can get to! He has electrocuted himself more times that I care to admit and attempts to take child safe caps off of every outlet that they are in. His favorite person other than mommy is his sisters! He follows them everywhere and wants to do everything they do. He doesn't even mind when they pick him up and drag him around just so long as he can be part of the play he's good with it! Parker has started free standing and cruises along furniture and loves to walk with his walker push toys. His favorite game is holding someones hands and going for a walk. He has started having full on throw yourself on the floor tantrums but they are thankfully short lived before distractions work to move him on to something else! He only naps once a day but is a happy happy little man. He loves other people and makes friends with everyone. He has apparently been gifted with the "Merritt charisma" when it comes to women, they all swoon over him! haha! He is a cute happy and easy going little man I am so so lucky to have the three most amazing kids in the whole world!