Sunday, August 31, 2014

Ethne's Headstone

Ethne's headstone was placed at her grave about a week before Memorial Day 2012.  Since then we have posted many pictures of it, but have never really talked about it or the images we chose to have engraved on it.

We have seen a lot of different headstones with a lot of different styles, stones, engravings, and images.  We wanted it to be special and to memorialize our Princess, but also classic.  We decided on grey granite because it's easy to keep clean and less likely to crack or break.  We also didn't want something high profile so we went with a flat stone with a slight angle to it.  We wanted anyone who saw it to be able to get a glimpse into the personality of Ethne.  Obviously we had her name, birth date, and death date engraved on the head stone.  We wanted there to be a vase or other receptacle for us to put flowers or other decorations in, so there is a hole for that at the top of her headstone.  We chose to have an elephant for obvious reasons-- Ethne and her "ephant" were inseparable-- but also because elephants never forget, and we will never forget.  The minion was also twofold in that it comes from one of her favorite movies and that it represents her personality so very well, she was so loving and willing to help, but also playful and mischievous.  There's a tiara, because she is and always will be our princess.  Last but not least is the inscription "Daughter of a King."  This inscription also has two meanings for us.  The first is superficial and plays into Lawrence's nickname for her-- Princess.  The second is more meaningful and comes from a beautifully written and illustrated children's book by the same title.

To summarize the story:  There is a farmer's daughter whose clothes are old and patched, she plays with the other town children and some of the richer children tease her, but she doesn't let this get to her because her parents have taught her that she is a daughter of the King and that he loves her, no matter what.  As she grows she has other experiences that teach her about being a daughter of the King and of how she can go to the castle to live with him some day.  She eventually marries a young man who has also been taught that he is a son of the King and they work together to be able to live in the King's castle one day.  They have children of their own and raise them in the knowledge that they are also children of the King.  Finally they grow old and take their journey to the castle.  The journey is hard, but they have each other for help and support.  Along the way they meet others on their way to the castle and they help these others along their journeys.  Eventually they make it to the castle and the King greets them, by name, with open arms and welcomes them home.

It is such a beautiful and profound story that teaches of each person's worth and of our mission here on earth in such a way that even children can understand.  It was one of Ethne's favorite bedtime stories and made even Lawrence tear up when he read it to her.  In so many ways this story and inscription remind us of our Princess.  She was so kind and loving to everyone and she knew that she was a princess.  It also reminds us that, not only will our father, the King, welcome us with open arms when our journey is through, but also that Ethne will be there, a crooked grin on her face, and her arms wide open and ready to give us great big hugs.

We hope that all those who see her headstone get at least a small clue of who she was is.

Sunday, August 24, 2014

My Nemesis

The stairs...

Anyone who knows me knows that I have a bit of a clumsy streak.  I blame this on genetics.  Stairs and I have never been the best of friends.  I fall down them, trip up them, and otherwise don't always get along with them.  Why this didn't cross my mind when we were looking at (and purchasing) a house I'm not sure, because things might have gone a little differently had I thought about my never ending conflict with stairs.  But it didn't really cross my mind and we purchased a house with a lot of stairs.  Don't get me wrong, I love our house, and I love our ward and neighbors even more-- I just have a love/hate relationship with stairs... all of them.

About a month ago I was carrying a pack and play down the stairs and took a wrong step, on the second step down.  I took a not so nice bouncy ride down the stairs and found myself bruised and walking funny for a few days.  To be honest, I feel lucky that it took me so long, while living in our house, to take such a tumble down the stairs.  I was also feeling lucky that I wasn't carrying Baby J at the time.

Last Friday (Aug. 15) I had another encounter with the stairs that did not end quite as well.  I was doing something that wasn't so smart.  I was trying to get some things cleaned and organized and in the process I had found several items that needed to go to the basement.  I didn't want to make a whole bunch of trips up and down the stairs so I was stacking stuff on the top step to the basement.  As I did so I leaned over the baby gate at the top of the stairs.  I thought to myself that I shouldn't be leaning over the gate like I was.  Just as that thought left my mind, said baby gate gave way and I went with it, head first, down the stairs.  Baby J and Mr. E were playing contentedly in the family room, so neither of them were in danger of getting hurt or coming along for the ride.  About half-way down I heard a lovely snap and before I knew it I was in a painful heap at the bottom of the stairs.  A quick self assessment told me that my head and neck were both fine and that the snap had come from my right arm.  I sat myself up, let loose a scream or two and gingerly placed my obviously broken right arm on my lap.  I found my phone a few steps up as Mr. E made his way down the debris littered stairs to me.  "Mommy, you fell.  Mommy, are you ok?  Mommy, you're crying..."  Yes, yes, yes...  My possessed phone was refusing to make an outgoing call.  I shut it off, "Mommy, your phone died."  Turned my phone back on and hefted myself to my feet with another scream.  Got to the top of the stairs and on the floor near Baby J, phone finally rebooted.  Try to call Mom, no answer, great.  Dad, no answer, shoot.  Try to call Lawrence at work, call is interrupted by Dad returning my call, possessed phone freaks out, hang up.  Dad calls back, "I fell down the stairs and broke my arm come take me to the ER."  Hang up, call Lawrence.  He feels helpless, tells me to call Sarah.  Call Sarah, she comes right over.  Meanwhile Baby J is upset because I'm upset so I somehow finagled him onto my lap.  Sarah made it over with another neighbor hot on her heels.  Sarah took J and started getting him food, second neighbor got E's swim trunks and took him to Sarah's house where there was a party going on, complete with a water slide.  Then the husbands showed up, and they gave me a blessing.  This helped calm me some.  Finally Mom and Dad showed up.  Mom took me to the ER, dad stayed with the kids.  Then it got boring.

We waited for an X-ray to tell us how bad the break was and if it would need surgery or could just be set.  Then we waited for the orthopedic doctor to come set it.  Some time during the waiting Lawrence got an employee to come in so he could leave work and be with me.  Then Mom got a call asking where my baking soda was, my youngest brother had been stung by a wasp, three times...  Mom left to attend to swelling post stings.  The orthopedist finally came with a team of doctors to put me out while he set my arm.  According to Lawrence I kept telling Mr. E to get off me, that he was hurting me, during the procedure.  They set the bone, splinted my arm and we waited some more, this time for the sleepy drugs to wear off and for the doctor to discharge me.  We didn't get home until 1 am...

On Monday I went back for more X-rays to see if the bone had shifted and to cast my arm.  Fortunately it was a clean break, it set well, and didn't shift, so I didn't need surgery!

Lesson learned, don't lean over baby gates.  I can laugh at it all now, so you can too.

Friday, August 22, 2014

Life With a Stoma

This is going to be a slightly boring post for anyone who doesn't want to know about stoma care, so if you don't feel free to skip it, but I feel like it needs to be made.

I meant to make this post while Baby J still had his stoma.  I was going to make a whole video and it was going to be awesome.  But I'm not that good, so it didn't get done.  April came around faster than I thought it would and I didn't have hands to help me make the video (Lawrence was working crazy hours earlier this year).  So I'll make the post now and include lots of pictures.

When a person has as stoma they have to wear an ostomy pouch to collect the output from their stoma.  There are many different types of stomas and they can be just about anywhere on a person's belly.  Baby J's stoma was called a double barrel loop stoma because both the functioning stoma and the mucus fistula (the non-working part) were in the same place, attached on one side and looped together.  This was easier to take care of than some other types of stomas because the two pieces were together.  Some people have two separate stomas, the working one and a mucus fistula, that are sometimes close together and sometimes not-- occasionally these require two ostomy bags.  But I'm not here to talk about stomas etc. just to talk about Baby J's stoma and how we took care of it.

Before we left the hospital the nurses showed us how to take care of the stoma, there was also a video we had to watch.  Then the nurses placed an order for ostomy supplies with a medical supply company for us.  I wish I had asked more questions about what they were ordering and why because when our first order came it had supplies in it that I didn't know how/want to use and I was confused about how much of everything we had received.  I wish I had taken more time to talk to the nurse, asked her what she was ordering, how much, and why she was ordering the things she was.  This would have saved us some money and some confusion in the first few days home with Baby J.

The first few days (maybe even week) after we brought Baby J home from the hospital we were going through a lot of ostomy pouches, like 2 or three a day.  It seemed like nothing we did worked to keep them from leaking.  The hospital sent us home with a whole box of pouches and supplies to get us through until our order of supplies was delivered.  It turned out that the pouches we were using were too small for our chunker baby.  I went to the internet for some help and reached out to other parents of children with HD.  They were super nice and gave lots of suggestions to try.  We tried some of their suggestions and finally found a combination of tricks that worked well for us.

Here is a step by step of what we did to keep pouches on Baby J and the products we used that worked well for us:

Prep:
You may need to restrain the child:  the easiest way to do this is to have another adult to help hold down arms and legs, but you can also use a blanket or two to swaddle arms and legs.  You do this by getting a larger blanket (or two small blankets) and laying the child on them as if you are going to swaddle them with a corner on each side, then pin one arm next to the child's side, wrap blanket over it, then tuck the blanket corner under the child, do the same on the other side.
Cut a hole in the wafer that will fit around the stoma.  We were lucky in that Baby J's stoma didn't change size much so I made a template from an old wafer's paper backing that I was able to use over and over.  Then warm the wafer so the adhesive will form to the skin well-- if you are using a one piece system be careful that your heat source isn't too hot or it will melt the bag, this isn't a problem for two piece systems-- I put the one piece system in my bra or sat on it to warm it.



1.  Remove the old bag and wafer, if you use a one piece system they come off together, sometimes on a two piece system the bag and wafer will come off separately.  Unfortunately this often makes kids/babies cry because it's like pulling off a big bandage.

2.  Clean the area around the stoma with a gentle, lotion and scent free soap, water, and a lint free cloth.  We used Johnson and Johnson's baby wash.  You have to scrub a little to make sure things get really clean and be sure to rinse well and then get it thoroughly dry.  This was easiest for me to do in a bath.

3.  Spread stoma powder on the area that will be covered by the wafer/bag.  The stoma powder will collect on any remaining adhesive residue, this will appear slightly raised and the stoma powder won't easily blow away.  Rub these areas vigorously with your finger (I wore gloves for this part) to get all the residue off his skin.  This ensures a good seal between the new wafer and the skin.  Rinse with clean water and dry.

4.  Warm the skin by placing a warm pack or hand over the stoma and surrounding skin or using a blow dryer.  This makes the adhesive on the wafer mold to the skin better.

5.  Apply cavilon skin protectant to the area that will be covered by the wafer, I used the wipes, but there is also a spray available.  Do this in at least 3 layers as this will cause "crusting" and make the wafer stick well-- allow each layer time to dry before applying the next.

enjoying the warm pack
6.  Apply stoma paste around the base of the stoma like a caulk.  We used a syringe to make sure the paste went on in a thin ribbon and was easy to manage.  Also put paste around the hole on the wafer that will go around the stoma, after peeling off the paper backing.

7.  Place the wafer and/or bag over the stoma making sure there are no wrinkles in the wafer.  I used a q-tip around the stoma to press the wafer down and make sure I got a good seal.  Then warm the bag/skin and put gently pressure on the wafer to ensure a good stick.

This system kept bags on for up to three days for us.

The only other trick to keeping bags on, that we found, is emptying it often.  I emptied it at every diaper change-- more often if it filled with gas between.

My list of stoma care essentials:

Hollister one piece bag and wafer system
Stoma powder
Stoma paste
Syringe
Nitrile gloves
Johnson's baby wash
Lint free gauze
Blow dryer
Wash cloth
Water
Cavilon wipes
Q-tips
Scissors
Marker (to trace the template onto the new wafer)
Changing table
Blankets
Another adult

Saturday, August 16, 2014

On a completely unrelated note...

I got in a fight with a flight of stairs...


...I lost, or rather my right arm did.

As of right now they don't think it will need surgery, but we will find out for sure on Monday.

Wednesday, August 13, 2014

A Post I Have Been Thinking About for a Long Time, Featuring Robin Williams

When I was about 15 years old I earned my Eagle Scout award.  My mom wanted me to get it before I turned 16 because she was worried that if I waited that long I might not get.  Upon completion we arranged my Eagle Court of Honor and sent out some announcements to family and friends.  Unbeknownst to me, my mother had found the addresses of a few other people to send invites to.  I believe it was right after my court of honor that my mom came to me with a stack of letters to open.  The majority were cards of congratulation from all of the living US presidents - including Bill Clinton (who was president at that time).  Even though I haven't agreed with all of them, I truly still appreciate their responses, even of they were generic.  But there were two others that were included that I couldn't wait to brag about to my friends.  One was a letter from Dave Thomas - the founder of Wendy's, and the other included an autographed picture that said, "To Lawrence, Congratulations!  -Bob Hope" I was hoping to put a picture of it on here but it's still at my parents house apparently.  Growing up I loved listening to comedians.  I would retell their jokes and learn their routines.  I even remember doing a pantomime from Red Skelton for a talent show in Elementary School.  Skelton and Hope were hands down my two favorites.

In college, I began making it a habit to get the autographs of performers I was able to meet.  People I admired like Byron Stripling, Brian Bromberg, Wycliff Gordon, The Bar-J Wranglers, and others.  The wall in our bedroom shows about half of them right now.

When Melissa was pregnant with Ethne, we attended a Brian Bromberg concert at BYU-Idaho.  One of the things we asked him to sign was a poster for our unborn daughter.  He very graciously did and we were proud to have gotten Ethne her first piece of "Swag."  We keep that poster in her memory chest.

After she died I was looking for ways to help keep her memory alive, while trying to bring some happiness into our home.  I found a website online that had a list of celebrity addresses and decided, in secret, to take some of the case sleeves of Ethne's favorite movies and get them autographed in her honor.

I came up with different variations of a letter that I sent out to each actor (trying to personalize each one) and included a return address so they could send them back.  I don't remember who responded the fastest but I think it was Zachery Levi with our Tangled sleeve.  It even said, "Love & Blessings.  You'll be missed."

Shrek 2 was returned because the address for Mike Meyers was incorrect.  Muppet Treasure Island was also returned with a card thanking us for the support, but that Mr. Oz does not respond to personal correspondence.  At least they sent something and gave us back the sleeve.  We were grateful for that.


We also Got back Cars with a signature from Larry the Cable Guy, who also signed it as Mater.  We really thought that was neat.


I think Melissa's favorite had to be from Jodi Benson - the voice of Ariel.  She not only signed the sleeve, but included an additional signed picture of her and returned the letter I sent her.  At the bottom of the letter she said, "I'm incredibly sorry for the loss of your precious daughter.  I can't imagine... May God comfort you both daily - God Bless."  That personal touch really meant a lot to both of us.


The one that I think I was most excited about was our sleeve from Robots.  This is a movie that Ethne loved so much she scratched it and made it unwatchable when she tried to put it in the DVD player herself.  I planned on sending it to a couple actors from the film including Ewan Mcgregor and Drew Carey (another one of my all time favorite comedians), but out of fear of losing it I kept it after one signature - Robin Williams.  The movie sleeve was signed along with another picture and included a generic letter from his office.  I don't know if the signature is really his, but I also won't allow anyone to convince me otherwise. You see, Robin Williams was another big comedic influence growing up.  Although I was not familiar with how vulgar he could be, I did know that he had a personality that could make anyone laugh.  When I was little I remember waking up in the middle of the night and laying down on the floor by my parents' bed.  To help calm me down from a bad dream, or something, they would turn on Nick-At-Night (It was probably so I would just let them sleep).  I remember two shows that I would watch - Mr. Ed, and Mork and Mindy.  Mr. Williams was one of the first celebrities I could identify.  I remember hearing once that he could be hard to work with on a movie because he was always making everyone laugh.  I remember thinking that I wanted to be like that-- someone who made everyone around him happy.


Upon hearing about his death I was quite saddened.  When I found out it was a suicide, it hurt me.  I don't know what he was going through and I am glad that I don't have to deal with the same pains and sufferings he did.  I view this ending as the greatest tragedy to a life that I admired.  Again, I don't know his whole story, but what I did know I enjoyed.

As I write this next part, I want it to be understood that I personally feel that suicide is never the right path.  It is tragic, selfish, and, if you look at the eternal perspective, it is not a simple way out.  It does have consequences.  That having been said, since Ethne's death I have seen suicide from a different perspective.  Be careful judging someone who chooses this path (Matthew 7).  We don't know what the Lord knows.  While I still know that it is wrong, I also know that God loves us as his children.

After Ethne's death we joined a grievance group that was headed by a man who's boy had committed suicide a few years before.  He talked about suffering with depression that was so strong he had contemplated it himself.  He said that going through that gave him more insight into what his son was going through.

Later on, I met someone who told me about a friend who committed suicide while preparing to go on a mission.  Even though it had happened a little while before, I found myself praying for that family and hoping that they had found strength in the gospel.  I then thought about that boy's situation and prayed for understanding on how God would deal with this situation.  I still don't know, and am very grateful for a Heavenly Father who is both just and merciful who does know, but the following quote did come to my mind:

“The Prophet Joseph Smith declared—and he never taught a more comforting doctrine—that the eternal sealings of faithful parents and the divine promises made to them for valiant service in the Cause of Truth, would save not only themselves, but likewise their posterity. Though some of the sheep may wander, the eye of the Shepherd is upon them, and sooner or later they will feel the tentacles of Divine Providence reaching out after them and drawing them back to the fold. Either in this life or the life to come, they will return. They will have to pay their debt to justice; they will suffer for their sins; and may tread a thorny path; but if it leads them at last, like the penitent Prodigal, to a loving and forgiving father’s heart and home, the painful experience will not have been in vain. Pray for your careless and disobedient children; hold on to them with your faith. Hope on, trust on, till you see the salvation of God” (Orson F. Whitney, in Conference Report, Apr. 1929, 110).

The Atonement is for all of us.  I don't know what the eternal destiny is for Mr. Williams, all I know is that he and his family are in my prayers.  I pray that they may all come to know the truth.  I even pray that Ethne might even have the chance to help guide someone who was influential to me from my youth.  Many of you, if not all of you, prayed for us when we were first suffering our loss.  Take a moment and pray for the Williams family and any others who are suffering losses and affliction.  They need help just like we did.  I testify to you that it is important.  Never in my life have I felt the strength of the prayers of others like I did when Ethne died.  I literally felt that faith carry us for a long time.  Only 2 other times in my life have I felt that and neither of those times were the feelings as overwhelming as then.

To all of the celebrities that we contacted (or at least tried to) we thank you for your talents and that you shared them with us.  A very special that you to those who responded.  We only had one letter that we never heard back from, and for all we know it was because by the time he was able to get back to us they were no longer forwarding the mail from our apartment we left a little over a year ago.  And to Mr. Williams, we pray for you as we say farewell to someone who I still maintain is/was the greatest cartoon voice artist ever!











-Lawrence

Saturday, August 9, 2014

Anything for a Friend +

We have had a pretty incredible weekend, it started on Thursday.  It started with Lawrence miraculously getting two WHOLE days off work, in a row!  He had some gigs at a couple state fairs with a band he has been playing with for a couple years now and needed some time off work for those, as well as to just have some time off with family and to relax.  It was so wonderful to have him home, to spend time with him, to relax, to be together.  Mr. E was so happy to have his "Gru" (each week we get new cartoon character names) home to play with, snuggle with, and otherwise terrorize. I was happy to have extra hands with the boys and Lawrence was just happy to not be at work.  Thursday we went bowling with my brothers and grocery shopping as a family, that night Lawrence headed to the Weber county fair to play with his band.  I stayed home with the boys so they could nap.  Friday we did some laundry, some cleaning, and some packing before heading off to the Salt Lake county fair for another gig.  We all went this time and had fun listening to the band's music and visiting some of the booths, Baby J even got his first (microscopic) taste of a snow cone.  Then it was home to unload musical instruments and load the stroller and bags before heading off to Ogden.  We spent the night in a hotel and had a lot of fun watching Mr. E try to jump from one bed to the other and run around the room.  Then Saturday morning we made our way to Weber State campus bright and not too early for a 5k.

About the 5k:  About two months ago an angel mommy that I'm Facebook friends with posted that she wanted to participate in the Anything for a Friend Fight to the Finish 5k.  She wanted to create a team in honor of her angel and needed at least 25 people to make a team.  We joined the team.  I had been toying with the idea of doing a 5k and getting to meet this angel mommy, Ashley, in person was the icing on the cake for me.  I have been following Ashley's blog for a few years, since before we lost Ethne, and have  admired how she and her husband have handled the tragic loss of their daughter with faith and enduring.  I was looking forward to the event and to meeting and connecting with another angel mom.













The event started with an explanation about how Anything for a Friend was started, what they do, and why we were there.  Then there was a balloon release and the "run" started.  Along the route they put up posters with pictures of the people each team was there in honor of.  Many were cancer patients or survivors, some were for other loved ones, and a few were teams that just wanted to help.  We loaded the boys in the stroller and set about the 3.2 mile walk with a very large group of people, with a team of people we really didn't know.  Ashley and her family were so nice and made us feel welcome, and the kids had a lot of fun running part of the route together.  As we walked I thought about Ethne and how we are fighting to our finish so we can be with here again, I thought about Ashley's angel and her fight, I thought about Baby J and his fight with HD, and I thought about little Ethan-- who is still fighting his leukemia.  They are all heroes in my book and I am grateful that my life has been touched by each of them in one way or another.

While we walked I also thought a lot about answered prayers and blessings, as we just had some big ones fall into our laps...

Earlier this week we received a hospital bill for Baby J's NICU stay.  I won't go into specifics, but let's just say that it was big.  Our insurance for the 4 days of last year Baby J spent in the NICU wasn't very good insurance.  They payed their max allowed amount, but this policy had no out of pocket max and their portion was only drops in the bucket of 4 days worth of NICU expenses.  I was panicking.  But we did apply for some help through the hospital group that runs Primary's and were waiting on a decision, I was told it would probably be made by Friday.  So Friday I called to find out what had been determined.  The man I spoke with on the phone was very nice and told me that a decision had been made that morning.  He asked if I was ready to hear our new balance, I looked for a pen.  He waited patiently while I hunted a pen down, when I said that I couldn't find one he said "I'll just tell you, it's a really easy number to remember."  He then informed me that our entire debt had been forgiven.  I couldn't believe it.  This huge bill, that we would have been paying off for years, had been taken care of.  A huge weight lifted off my shoulders, I was so happy and relieved that I was crying.  Our prayers were heard and answered, we had been immensely blessed.  I am so grateful for such charitable hospitals that took care of my baby, and for a loving Heavenly Father that gave me faith that everything would work out.

I am feeling so thankful that we were able to have this weekend to spend time together and to reflect on so many blessings.

Monday, August 4, 2014

Big Brother


I remember when Mr. E was born.  In the hospital Ethne was more concerned with eating pretzels than her brother, but she let us lay him on her lap to take a picture.  After we brought him home Ethne slipped easily into the roll of big sister.  She wanted to hold the baby, kiss the baby, and help with the baby.  She would fetch diapers, give him his binki, play with him, and just wanted to be the best big sister she could be.  Ethne loved her baby so much.





When Baby J was born Mr. E also visited in the hospital.  He also wasn't sure what to think of this new thing.  He didn't want to hold Baby J and he couldn't figure out why mommy kept trying to get him to.  He was also a bit jealous, whichever parent was holding Baby J, Mr. E wanted to be held by that same parent.  He kept climbing up on the hospital bed to be with me, if I handed Baby J off to Lawrence Mr. E would climb in his lap.  He did try to share fruit snacks with Baby J, which was very sweet.  Then Mr. E didn't get to see Baby J for 2 weeks because he wasn't allowed in the NICU (flu and respiratory season).  Splitting the time was so hard, but that's a whole other can of worms.  Mr. E stayed with his grandparents and was very well cared for, but it was hard for him to understand where and why mommy and daddy were all the time.  After we brought Baby J home Mr. E really wanted nothing to do with him.  We tried to get Mr. E to hold Baby J, to hug him, kiss him, play with him... Mr. E just wasn't interested.  For a long time Mr. E just played around Baby J, barely acknowledging his existence.  Rarely he would surprise me by asking to hold Baby J, or giving him a kiss.  In the last month or so Mr. E has started to help with Baby J, bringing him toys, talking to him, even holding him sometimes.  The other night I was putting Mr. E to bed and Baby J was with us, I sat Baby J next to me so I could give Mr. E a hug and kiss.  Baby J tipped over and start crying.  Mr. E was immediately concerned and wanted to kiss Baby J's bonk better-- made me tear up a little.  He has really started to step into the roll of big brother and it makes me so happy.  I so look forward to the day that they play together, fight, make massive messes, and lots of noise.

It makes me a little sad that Mr. E never got to that point with his sister, that he hasn't known the joys and frustrations of a sibling yet.  But he will, with Baby J.  I hope that they will enjoy each other more than they don't, that they will be best friends and stick up for each other.  I hope that they will learn to embrace other siblings they may have and know that they are stuck with each other forever and that they will love it (or at least learn to).  I am so thankful that Mr. E has accepted Baby J and is starting to be his big brother.

Monday, July 28, 2014

Diaper Duty

As I'm sure you can guess, we change a lot of diapers around our house.  We did get Mr. E *mostly* potty trained, so that has cut down on our diaper usage considerably, but Baby J still requires a change about every 2-3 hours, except at night.  That adds up to roughly 6-8 diapers a day (sometimes more).  So I thought I'd share our diaper duty essentials, in case anyone was wondering.

1.  I swore with our first two kids, that a changing table was unnecessary, the floor was a great place for changing diapers.  On the floor I didn't have to worry about them falling off anything, the floor or a blanket was relatively easy to clean if there was a mess, and it was cheaper.  When I was pregnant with Baby J I decided he should have a dresser, so I shopped some yard sales.  I found one for an awesome price, and it happened to be a changing table/dresser in one.  Boy am I glad we have it!  Changing ostomy bags on the floor would have been a serious pain and doing it on the bed/couch/crib would have been messy.  The changing table is so nice because I don't have to bend over or get down on my hands and knees to change all the diapers and everything I need is right there, nice and handy for me to grab.





2. I love huggies diapers.  I'll admit, I haven't really experimented a lot with different brands, but when you find something that works well for you why mess with it?  Plus, it's what the hospitals all used, so it has to be good, right?  I like the snug and dry and the little snugglers (I know snug and dry got a bad rap a little while back and there was a recall, but I've never had issues with them).  They have great elastic waistbands and leg bands that keep stuff in and they are super absorbent, bonus that Mr. E likes the Mickey Mouse designs on them.







3. I made my own wipes when Baby J first had his surgery, but the second roll got mold on it while I was using the first roll, plus they really weren't any cheaper than buying in bulk.  So I checked out a few different types of wipes and went with the simply right wipes from Sam's Club.  These wipes are a good size to keep your hands clean, have a texture to them that helps with scrubbing power, aloe, and no alcohol or fragrance so they don't burn.  These wipes have worked very well for me and are a good price.











4.  I mentioned, a few posts back, the combination of items that I found to help keep diaper rash at bay (I also mentioned that I didn't want to endorse certain products, but I love this stuff so much that I wasn't to shout it off the rooftops).  I tried lots of different diaper rash creams and remedies before finding this little beauty and I tell you, the package doesn't lie.  It says that it will reduce redness in 1 diaper change, and it does!  There is magic in this diaper cream.  Since finding it I have used a few other creams when I ran out of balmex and nothing has done as great a job as the balmex.  My nearest walmart has had packages with coupons on them, but you can print a coupon for it here.


 5. Last, but not least, is the magic that is stoma powder.  You have to buy this little beauty from a medical supplier, and if you want insurance to pay for it (it ranges in price from $7-$200/bottle) you need a recommendation from a doctor.  I ran out of it for a few weeks about a month after Baby J's surgery and learned what this stuff really does for him.  When I was out of stoma powder I made sure to get his bottom dry before applying the cream, but he still developed a small rash.  The stoma powder absorbs moisture and works some additional magic in a partnership with the cream.  For a yeasty rash I use nystatin powder in place of the stoma powder, it does its job, but not as well as the stoma powder.  If you can't get a dr. to sign a note for stoma powder I've heard that corn starch can be a pretty good substitute.

These are my HD diaper duty essentials.

Sunday, July 13, 2014

In His time

Apparently I have to keep learning this lesson, that things I want/need happen in the Lord's time and not necessarily in my time.

After high school and upon starting college I was anxious to get married and start a family of my own.  I dated quite a bit and was even engaged at one time, but that didn't work out and I was incredibly disappointed at the time.  But had that worked out I wouldn't have met Lawrence and we wouldn't have the beautiful family we have now.  Marriage didn't work out exactly when I wanted it to, but when I needed it to, and with the person that I need(ed) in my life.  The Lord knew this even though I didn't.  I am beyond grateful for Lawrence and our temple marriage.  He is a hard working provider, a wonderful father, and my best friend.









G and I wrestling
Growing up I was happy with my one brother, but I always thought it would have been fun to have more siblings.  My parents considered adoption when I was younger, but it never felt right to them.  It was finally right when I was a junior in high school and about 18 months later our family was blessed with my brother G.  He is such a great example to my kids and a really proud uncle.  Then they did foster care and went through a handful of children who were eventually reunited with their biological families until I came into our lives.  He is a happy, busy (super, extra busy) boy who fits right in and loves my babies too.  I is also a little younger than Ethne and I'm sure my parents had always thought that their kids would be older than their grandkids, but both Ethne and I joined our family when they were meant to.

When I was pregnant with Ethne my mom found out that she had a tumor on her pituitary gland and would have to have it removed.  Travel was difficult, she was sick, and I was scared and a little helpless to do anything for her.  Ethne was born four days before her due date.  This allowed my parents to come see her and us to visit my parents for Thanksgiving, before my mom had to have her surgery.  It was such a blessing to me to be able to see my mom and for my baby to meet her Grandma.  My mom is fine now and the tumor was benign, but that was a scary time for all of us.  Ethne's birth allowed us time together and gave us something else to think about when we were all consumed with worry about my mom.

Through my entire pregnancy with Baby J I was certain he would come early.  Both my other two were early, so this boded well for me.  I was determined that he would be born before Christmas.  The last month or so I was done.  I was tired, sore, big, and beyond ready to have this baby.  It had been the most difficult of my three pregnancies with some morning sickness, soreness that I hadn't had before, and I was also battling with emotions that I hadn't experienced before.  I prayed that he would come so I could be more comfortable and have less pain.  So when contractions started coming pretty regularly on Dec. 21 I was thrilled.  But it wasn't to be.  After going to the hospital twice in 24 hours only to make very little progress and have the contractions stop, my hopes were dashed all over the floor.  Little did I know that this was a blessing in disguise.  Five days later, on the 26, my water broke and the contractions were unmistakable, Baby J made his entrance.  I was excited to spend as little time in the hospital as possible and take my late Christmas present home to his brother.  But you know how well that worked out.  Again, I was beyond disappointed that my baby was sick and wouldn't be coming home on my schedule.  It was also frustrating to sit around the hospital and wait for the holiday lag to pass so we could get tests done and find out results so we could know what was wrong with our baby.  Had Baby J been born much earlier we would be paying a lot more for his surgeries and hospital stays, also if he had been diagnosed sooner.  Our insurance last year wasn't the best, but it covered enough for the last 4 days of last year that we weren't left with too many out of pocket expenses.  Our insurance that kicked in on January 1 had a reasonable deductible and not too bad of an out of pocket max (both of which we have met).  Had Baby J been diagnosed sooner the other insurance had a higher deductible and no OOPM.  While it meant that I was uncomfortable a few days longer than I really wanted to be Baby J came just when the Lord needed him to come.  Even though there have been a lot of bumps along the way, I'm glad he came when he did and thankful that someone who can see the grand scheme of things knew when his arrival would be best for our family.

I'm sure that I will continue to be taught this lesson, and I will continue to look for the blessings that come from things happening in the Lord's time and not always in mine.

Saturday, July 5, 2014

(Ir)rational

As we grow and learn in this world we often develop likes and dislikes.  Often these likes and dislikes stem from strong emotions regarding the subject.  For example:  from the time I was about 3 years old I wanted to play the flute.  That's a pretty young age to want something so specific, but I associated the flute with my (then) favorite Aunt, Debbie, and I wanted to be just like her.  Now I play the flute, studied it in college, and teach it to other aspiring musicians-- I still associate it with my Aunt.  Along with these likes and dislikes we often develop fears.  These fears are also usually tied to strong emotions.


About 4 or 5months after the accident I was home alone with Mr. E.  He was napping and I was engaged in some household chore or another.  We were living in an apartment that was part of a large complex.  Suddenly the quiet afternoon was interrupted by the rapid thump-thump-thump sound that only the spinning blades of a helicopter make.  I couldn't help it, I started hyperventilating and crying, the sound was so close.  I looked out my bedroom window and saw the helicopter coming closer and it was obvious it was landing near my apartment.  Then I noticed the life flight emblem.  My breathing and crying became more frantic.  Despite my belief that you should never wake a sleeping baby, I ran to Mr. E's room and pulled him from his crib.  I remember repeatedly saying "they can't take my baby, he's mine, you can't take him."   After several minutes of crying, and shouting at the helicopter that couldn't hear me, and rocking my now upset baby, the logical part of my brain took over and I called Lawrence (I think he was at work) three times in a row-- our signal that something is wrong.  He called me back talked a little sense into me and told me to call my parents.  I finally called my mom and she came and picked us up.  I'm pretty sure I was still hysterical when she got there, even though the helicopter was already gone.  Shortly after arriving at my parents' house I was able to calm down and the whole incident seemed a bit irrational to me.  I was so terrified that the helicopter was going to take my baby away and I wouldn't see him alive again.  But really, how irrational was it?

Even though I don't clearly remember the events immediately following the accident, and I certainly don't remember the helicopter taking Ethne away, that is what happened.  I remember my little girl, alive and trying to open a container of yogurt in the back seat, then I remember snippets of my own helicopter ride, then waking up in the hospital knowing that she was gone.  The helicopter took her and I never saw her alive again.  I still have problems with helicopters.  It doesn't matter if they are life flight or not, I have a small panic attack whenever I hear a helicopter close by.  It used to be worse, but since we moved we hear them flying over our house more often than we used to, so the panic has decreased some.  The logical part of my brain still realizes that panicking every time I hear a helicopter isn't exactly rational, but I can't help it.

Another fear that triggers a bad reaction is cement trucks.  Again, I don't remember the truck hitting the car, but they still frighten me and especially when I am driving.  This can be a problem since I live in Utah and there is always road construction and therefore a fair amount of cement trucks on the road.  I have learned to deal when they are far away, but I really panic if there is one right by me (in front, behind, or on either side).  I have learned to pull over when possible to avoid being too close to a cement truck, but when it's not possible I have to talk myself through and will often drive slowly to allow myself some space from the cement truck.  The latter solution may anger some other drivers, but it's far safer than me having a full on panic attack while driving.

Unfortunately this accident left me permanently scarred, both physically, mentally, and emotionally.  But I am learning to live with all my scars.

Saturday, June 28, 2014

3 - 36


Sorry I've been MIA the last little while, I have been struggling with what to post.  But this post practically wrote itself...


I have been in unfamiliar territory for a few months now, Mr. E passed his sister in age last fall.  But with his birthday here it has become more real.  He is such a sweet, fun boy.  He is doing so many things that make me smile... and others that make me want to pull my hair out.  Since 3 years equals 36 months here's 36 fun things about my big boy.

1. He is all boy!  Guns, swords, cars, trains, outside, superheroes, and busy--boy!
2. He loves to splash in the water, be it the pool or the tub.
3. He can get dressed all by himself.  Sometimes he puts his shirts on upside down, or his pants on backwards, but given another chance he will get it right.
4. Mr. E is mostly potty trained.
5. He gets his shoes on the right feet, without any help the majority of the time.
6. Mr. E loves to read stories.  He reads to himself, but really loves it when mommy or daddy read to him.  Curious George is his favorite.
7. He loves his brother.  Most of the time he plays around Baby J, but there are moments when Mr. E is very sweet to him and they just melt my heart.
8. He speaks very well.  He has lots of words and uses them well, sometimes a little too well.
9. Even though he is a busy boy he likes to snuggle.  He loves one-on-one time with mommy or daddy and snuggles are often what he wants most when he gets it.
10. His favorite movie is a little fluid, but he always goes back to Despicable Me.
11. He does and awesome Bugs Bunny impression.
12. Mr. E is allergic to chocolate and has some kind of dairy intolerance.  We are hopeful he will grow out of this.
13. Mr. E loves to sing.  We sing songs when he lays down for nap time and bedtime and he often sings along, he can also be heard singing while he plays.


14. Mr. E loves nursery.  He gets excited to go to nursery every time he sees us in church clothes-- it's hard to dash his hopes when it's not Sunday.

15. He loves to help me in the kitchen.  He will often grab and chair and bring it to the counter so he can help me make dinner, cake, cookies, etc.
16. He loves chicken.
17. Mr. E enjoys watching tv.  He loves Phineas and Ferb, Mickey Mouse, and Bugs Bunny, among others.
18. Mr. E enjoys doing puzzles and is very good at them.
19. He loves to count and can count to 12 all by himself and 20 with a little help.
20. He doesn't like his hands to be dirty.  If they get messy he stops what he is doing and runs to wash them.
21. He can be very independent and likes to do many things by himself, but every so often he gets it into his head that he needs help with something and it's hard to get him to change his mind.
22. He can be very stubborn (see above).
23. When he gets stuck or sees that someone needs help he calls for "Toodles" to bring a mouseketool to help (Mickey Mouse Clubhouse).
24. He likes to tease.  When Lawrence comes home after he's in bed he hides from Lawrence when he goes to kiss him good night.
25. He still likes to play with my hair.
26. Mr. E loves his Ginger puppy.
27. He thinks the Disney castle is a temple.
28. His favorite treat at the moment is marshmallows.
29. Despite his issues with dairy, he loves cheese.
30. He loves to play with his uncles, they are his best friends.
31. He calls popsicles ice cream.
32. He barks at the vacuum.
33. He likes to tell us what to do, that doesn't mean that we do it, but he still likes to try.
34. Mr. E is a lip kisser.  We don't know where he picked it up, but he kisses everyone on the lips.  If you try to kiss him goodbye or goodnight anywhere else he will grab your face and make you kiss him on the lips.
35. He loves kitties, really he likes just about any animal.
36. He hates anything tomato.








He is a sweet, smart, talented, loving boy and we wouldn't trade him for anything.  Happy birthday, Mr. E!!  We love
you so much!

Monday, May 26, 2014

Memorial Day 2014


This Memorial Day has left me a little more reflective than others have.  Just under a week ago my grandfather passed away and his funeral is tomorrow.  While I haven't had the best relationship with him in a long time, he is still a member of my family and I still care about him.  I hope that he has found some peace.  I know that he is with many loved ones, including my precious angel.  I know that he is now learning from his mistakes and is being given a chance to repent and make better choices.  I feel that Ethne is helping him do this.

I am trying to teach Mr. E to respect the cemetery and those who rest there, but it's hard to listen and to watch your feet when you are a busy little boy.  He will learn.  For now he gets to pick out flowers and take them to his sister, then run around some (while we try to stop him from running over headstones).






I still love that the cemetery puts up over 100 flags for veterans on this day of remembering.  They are so beautiful and the sound of them waving in the wind is calming and mesmerizing.

This tree was planted in the park next to the cemetery, by my family, for Ethne's 3 birthday, her first after the accident.  It continues to reach up to heaven and reminds us to do the same.  I hope that, no matter where I am, I can always remember this.  I hope that I can always honor those who have gone on before me by carrying on their legacy and can always be found reaching for heaven.

Saturday, May 24, 2014

The E Word

Enterocolitis.  From the time Baby J was diagnosed with Hirschprungs Disease doctors and nurses started mentioning this word.  They said we had to be on constant watch for it because it could be deadly.  As if I wasn't worried about enough, having just had a baby and having that baby be diagnosed with a condition that I had never heard of.  Now I had to watch for an infection that could potentially kill my baby.  No one really told me what it was or what caused it, just signs and symptoms to look out for.

We were pretty lucky while Baby J had his colostomy.  We were extremely cautious too.  He didn't go to church, I didn't take him shopping (except in an emergency), and we avoided sick people at all costs.  He never got this dreaded infection.

I finally figured out what this dreaded word means.  Enterocolitis is an infection caused by a build up of bacteria in the intestines and is very common in people with HD, especially babies and young children.  See, your intestines house a lot of bacteria.  Much of this bacteria is good and helps with the digestion process, it is supposed to be there (think probiotics).  But if you get too much of the bacteria, or if bad bacteria doesn't get expelled, it makes you sick.  Enterocolitis can kill the appetite with nausea, cause swelling which can block things up, releases toxins into the blood, and often lands the person in the hospital.  It can be caused by any kind of infection such as flu, colds, ear infections, and common antibiotics (which can cause a build up of yeast in the gut).  The best way to cure it is to clean everything out, which often means other antibiotics, specifically one called Flagyl.  This particular antibiotic basically kills everything, even the good bacteria.  It is hard on the body and apparently tastes awful.  Another way to cure it is to clean things out in a different way, a rather unpleasant way, with washouts or enemas.  If caught early enough this can clean things out without using antibiotics and without a hospital stay.

Baby J has had some follow-up appointments with his surgeon to make sure everything is healing how it should.  At each appointment I have been admonished to watch out for this unpleasant infection.  At his most recent appointment I was given equipment to perform the washouts.  She instructed me that, should Baby J get so much as a cold or should have to take antibiotics for anything (including flagyl) that we would have to do washouts to prevent enterocolitis.

The weekend before this appointment Baby J had been having a small fever, diarrhea, and vomitting.  I was getting worried as these are signs of the E word.  But he was acting pretty much normally, the fever was low and didn't last long and the other tummy problems were inconsistent.  After the appointment his appetite started to diminish and he became increasingly fussy.  I prayed about how to help my baby, Lawrence blessed him that he would get better, and soon I decided to try the washouts and see if that helped.  Immediately after the first washout his appetite was back and he became his happy self again.  After a few days Baby J is feeling much better and his symptoms are quickly disappearing.  He most certainly had this nasty infection and we caught it early enough that the washouts have cleaned it out without a hospital stay or the nasty flagyl.  I am so very thankful for answers to prayers and Priesthood blessings that helped my baby get better without having to go to the hospital.  I am also grateful for doctors that have studied and know how to help with things like this.