Ahh, Calm

Tatum had a super calm day today.  She woke up in a pretty smiley happy mood.  Her seizures were pretty calm all day.  I was able to hold her a lot today.  She even was tolerant of carpool!  She was sounding a little gurgly in the car so when we got home I hooked her right up to the sat monitor to see what her oxygen level was and she was about 93 which is pretty great for as horrible as she sounded.  I suctioned her just a little and she settled down pretty quick.  She was awake for quite a bit this after noon and into the night and was pretty content.  This is the part of the roller coaster ride that I like!

A little comic relief is always good when life is a little crazy like ours is right now.  We had an activity tonight for our youth ages 16-18.  It was a speed dating game.  Most of the adults were just there to support and so we were just standing around visiting with one another.  I was visiting with a few people from my neighborhood.  We were standing next to the drinking fountain.  Out of the corner of my eye I saw my neighbor boy come up to get a drink.  While he was getting his drink (can you see where this is going?) I could not resist, I reached over and poked his head down in the water!  Just then he looked up at me and that's right it wasn't my neighbor!!!!!  Even worse, it was an older gentleman that I had never seen before.  He looked up and smiled and said, "That was pretty funny".  I was horrified, so I said, "Sorry I couldn't resist, I guess I am a little juvenile:)"  Then I told him , "we have a drinking fountain at my house and i do that to my kids all of the time."  Lies, it was a total lie!  Anyway Halea and I laughed and laughed on the way home as i was relating the story to her.  It felt good to laugh like that.  Lance and I had a good laugh when I told him too.  I am such a ding bat.

I better scoot off to bed so I can be refreshed by 4am!  Cute little Tater bug.

Beautiful girl...

Tatum Update:  I do not like the roller coaster ride we are on right now with little Tates.  She had a decent night, woke up at 4am.  She went back to sleep after a little while and then she slept pretty solid for the morning.  She was a little gurgly this morning, but for the most part sleepy.
It was such a beautiful day today (over 70 degrees!) that I decided I really wanted to take the girls for a little walk around the neighborhood.  One of my neighbors stopped by and said that she would come with me.  An hour later we were all loaded and ready to go.  About half way around the neighborhood I could hear Tatum just gurgling.  We got home quickly to find her with a big bubbly slobber beard!  Poor little dear.  The rest of the day was a little sketchy.  I was totally planning on taking her to the kids piano recital, but Lance ended up just staying home with her because she just was not settled.  She had a pretty rough time while we were gone so it was a good thing that we didn't bring her.

(I wrote the above excerpt last night, until I was typing at the computer and my head was bobbing and my eyes were rolling.  I could not stay awake, so I am finishing yesterday and doing today's below.  Hope that is not too confusing!)

The kids did fabulous at their recital.  Their piano teacher is darling and she is the daughter of our good friends, so it was fun to get to visit for a little bit afterwards.   The rest of the night went really well.  Tatum got into her sleep pattern at a regular time so I was able to go to sleep at around 11:30. Miracle!

Tatum slept really good until about 4am.  I got up and sat with her until about 5 and then I decided to get her ready for the day.  It is one of my favorite times of the day with her.  It is quiet, and she is rested so she is usually pretty alert and smiley.  I feel like I can talk with her spirit best at this time.  This morning was no different.  She seemed a little more like herself today.  She stayed awake for several hours this morning and after the kids went to school I was in sitting down talking to her and she was so smiley and she was trying to blow raspberries (which she hasn't been able to do for several weeks).  She was really working her tongue and I was blowing them at her so she was smiling.  She just seemed happy and content.  Sometimes I really need that reassurance because I hate the thought that she feels trapped.  I don't want to pray her to stay in her broken body any longer than she needs or wants to, even though I want her to stay forever.  I am trying to overcome my own selfish desires, but it is not easy.  So mornings like this are reassuring to me.  I went to get the video camera and I heard her make a few noises.  She hasn't been able to make noises for several weeks either.  An occasional cry, but not much more than that.  It was a great morning.  I just love the sweetness that exudes from her, and the little bit of fight and spunk is awesome too.  She just makes me happy.
Here are some pictures I took of her this morning.  She just looked so beautiful to me.

One without the oxygen!  She may need a little powder on her face:)

 Hanging with the gabba guy

Roller Coaster, Grrr.

Tatum Update:  After having such a great day yesterday, I knew it was going to be hard to match for today.  Well I was right.  Tatum had a pretty good night and a pretty good morning, but the minute we got her going for the day, the gurgle machine started.  She did alright at the beginning of church, but it was downhill from there.  She started getting pretty gurgly during the first hour.  I had only brought my little portable suctioner, not the machine from home and I did not bring the sat monitor, so I had no way of checking her Oxygen level.  So I did suction her a little with the little suction device that I had, but I just was not feeling like it was doing a very good job.  By the end of church I just wanted to get her home and hook her up to the monitor to check her.  So that is what I did.  Well, the little stinker was at a 96!  She sounded pretty horrible, so i suctioned her a little bit and then she settled down and did much better since we have been home.  She is still a little gurgly, but I just understand that she has good days and bad days.  The bad days make me really appreciate the good days.
Tonight I went to the hospital to do a hand mold for a daughter.  Her mother is getting close to the end of her life (she is 91!), and she wanted a mold of her holding her mothers hand.  After I went and did the mold I went to the NICU to pick up some supplies.  One of the ladies that was working I have known forever and she has two kids with Cerebal Pulsie.  She asked if we were going to have a consult up at Primary childrens about Tatum's secretions and I told her we were on Friday.  She asked which doctor we were going to see. I told her and she said, "Oh you will love her, she has done all of my sons injections".  It was comforting to talk to her.  I have been a little nervous ever since I made the appointment.  Especially when Tatum has a good day like yesterday, i start to second guess myself and our decisions.  I think, oh her secretions are fine, it's getting better, we don't need to see a doctor.  Then she has a day like today and I think, we really need to do something for her!  Roller coaster.  The Lord works in mysterious ways to give me comfort and hold my hand:)

These pictures were from yesterday.  Hilary kept insisting that Tatum was cold (in reality it was about 80 degrees in our house!)  She just wants to help her little sister as much as she can.  Adorable.

Hilary is coming from the back this time, putting the blanket right over Tater bug's head.  Notice that the yo gabba gabba guy keeps appearing right next to her:)  I adore sister love.

Prom!

Tatum Update:  OK, Tatum did not go to Prom, but Halea did:)

 How has this happened, my baby girl is 17 and going to prom.  Time just flies.

Hilary was intrigued with the flower for Halea's date....Halea and Heidi went together to pick it up, adorable.  Halea is a great big sister, I didn't even suggest that she bring her.  

Two beautiful girls....

Tatum had the greatest day today.  She was super smiley, I don't think I suctioned her at all today, she breathed well all day, her seizures were pretty calm, she got to hang out in her little bed in the kitchen for some of the day while we cleaned and Halea got ready for prom.  It felt like a normal Saturday, not a lot of worry.  It felt nice.  Days like this make me think I wish this could just last forever.  Tatum is wearing an outfit that one of my good friends brought her.  I attribute this whole day to the new outfit.  You know how sometimes you just feel better in new clothes.  Maybe it's really a scientific fact.  Maybe we are on to something.  Hmmmm.   Luckily another good friend brought over an entire wardrobe for Tates.  People are so kind.  I haven't been able to shop really in months, so it was so exciting to have the retail therapy brought to my house.   I could go for a personal shopper!
Yesterday Primary Children's hospital called to make an appointment to see Tatum regarding her secretions. i hope that they can figure some way to help her.  I feel like right now that is her biggest challenge.  We will keep you all posted.
What a great day, the sun was shining, the house is clean, Tatum was happy all day, Lance cleaned the cars and fixed sprinklers, Halea came home a half hour earlier than I expected, we had leftovers all day, and we can sleep in tomorrow!  Life is good.

From the Mouths of Babes

Tatum Update:  Tatum had a pretty fair day.  She has still had times when she has been really gurgly, but she seems to work through it.  Lately it has been a little harder to get any of the secretions out with the suction machine.  I hope that the mucus is not going deeper into her lungs.  I suspect if that were happening that she would not be able to keep her oxygen sats where they need to be and that she would not then have times of breathing clear.  She is still pretty clear when she is sleeping and for awhile after she wakes up.  She is such a mystery to me.  I am really hoping that maybe this really has been a cold that we have been fighting and that maybe it is just getting a little better?  Who the heck knows.  She has been pretty sleepy the past few days.  She seems to be awake from about 5am to about 9am and then she will sleep for several hours and then she will be awake for several hours and then sleep at night.  So it seems like she is sleepy because her naps seems long but really she is still awake quite a bit.   With all of the meds we give her at night I can't believe she can be awake at all.
This morning when Hilary woke up I was holding her hand and helping her down the stairs and she said "Tatum is going to live with Trevin, I will miss her.  Zoe will miss her too."  (Zoe is our dog:) and Hilary's best friend) Out of the mouths of babes.  It sort of took me back.  I knew that someone had told her that, but it was just odd because for the past few days I had been thinking about how to talk to her about it.  I told her that I would miss her too, but we would see her again.  (Lance did say that he had talked to her about Tatum being sick and going to be with Trevin, it was not a premonition.   Then she moved on.   Heart breaking, but good for her to start getting the idea in her head a little bit.  She is so bright, I am sure she will get the understanding along with the comfort that she needs.  I hope we all do.  I know we will.  I just don't want to be there yet, ever really:)
May I just say again how grateful I am for the wonderful people who have rallied around our family.  I know that we could not have survived without good friends and family.

Hayden with Tates.  She dearly loves him.  Some days he is one of the few that can get a smile out of her.

A New Friend!

Don't get excited, it's a Pillow Pet.

A good friend of ours brought over pillow pets for the girls this morning.  Tates got a "bug" because we call her Tater bug and Hilary got a big black cat!  Hils was so excited.  She carried that cat around the rest of the day and I kept hearing her in the hall way meowing.  It was so cute.  

The bug is almost as big as Tatum!
Tatum didn't have the best or the worst day.  She had times of calm and times of gurgly.  Our doctor did not get a response from the doctor in Salt Lake that is going to hopefully help with her secretions, so we will hopefully know more in the next few days.
It was a busy fun day.  We had several visitors including my people that I visit teach who now come to my house!   Bet you wish you could somehow swing that right?  Every time I walked by Tatum or checked on her it seemed like Hilary had put a new toy on her chest.  She is always looking out for her little sister.  This morning she helped change her diaper and brush her teeth and put on her lip balm.  She likes to do all of those things for her.  It is very tender.  I don't know what she will think when Tatum is just gone.  I hope that Heavenly Father allows her a little understanding so she doesn't think we just got rid of her.  I know that all sounds morbid, but I worry about Hilary.  I deal with kids and death quite a bit at the hospital so I know she will be fine and I know she will be blessed with the understanding that she needs, I just worry and now you will all worry.  Sorry.  I love this time that they get to spend together and show what kind of love they have for one another.  It is truly one of a kind.

Monstrous Mucus Mayhem at the Mall!

From the title it sounds a little bit like a horror film, right?  Well it was.  The day started off really good, sort of.  Tatum slept all night, that's right all night.  That is the first time in about four years, oh wait that's me.  First time for her in several months, and really she only has a handful of times.  Luckily Hilary woke up at 2am cause we wouldn't want to get too comfortable.  I checked on Tates and she was doing well so I snuggled back to the couch.  At about 6 I woke up a little startled.  I checked on her and she was doing great.  I still had a few minutes until I needed to wake up the kids so I thought I will just lay down until 6:20 when I wake them up.  At 6:45 I sat straight up!  Lance had just gone up to get everyone going, but we started 25 minutes late!  Needless to say the morning was a little hectic.  On top of everyone starting late, Hayden didn't actually get out of bed until about 7:15 and we didn't notice.  Oops.  Yeah not the greatest Monday ever.  Once everyone was out the door, I hurried and got a few things done, got Tatum up and bathed and ready for the day.  She was pretty happy and smiley and then she went back down for a morning nap.  Halea had early out today and so she had asked if maybe we could go to the mall and look for jewelry for Prom and get screen covers for our phones.  No problem.  I decided to get dinner ready before she came home so that it wouldn't be a rush when we got home from the mall. (Tender Mercy)  It took us a little bit to get out the door, but soon we were on our way, Halea, Hilary Tatum and me.  We got to the mall and Tates was already a little gurgly, so i quickly suctioned her before we went in.  We got to the second store and I told Halea that I had better go suction her again as there was mucus coming out her nose and her mouth!  Good gracious.  There I was in the parking lot suctioning out little Tater bug.  Oddly enough I didn't really notice if people were staring at me.  Didn't really care at this point.  I loaded Hilary back on the stroller and we went in and found Halea, and finished up the few things that we needed to do.  When we got back to the car I called our doctor to see what we could do about her over abundance of secretions.  It is really becoming a real trouble for her.  We talked for a bit, luckily we didn't need to go into the office.  Our doctor is going to talk to a doctor in Salt Lake to see what we can do.    I suctioned her out again! and then we headed home.
 When we got home we started unloading the car that now looked like a crime scene!  There were machines everywhere, wipes, rags, bags, toys,  ugh.  When we got inside I changed Tates into her jammies because she had spit up mucus all over her shirt.  Got her settled back on her pillow, turned on a little show, cleaned her mouth, put her lip balm on and she got super smiley:

 She doesn't look any worse for the ware....

So Tates new nickname: couch poTater bug.  Apparently she loves to just stay home, be in her jammies, watch a little show and just chill.  Silly little girl.
 Sometimes it is scary to be her mom.  I feel like she is such a valiant spirit and I hope that I am taking care of her physically and spiritually like she needs to be.  I hope that she knows how much we love her and would do anything to help her be more comfortable.  She is so patient with me. I hope that the doctor in Salt Lake can help her have less secretions.  I think her life would be so much easier.  That is our new specific prayer:)  in case you are looking for anything to pray for, there is a suggestion.  Here comes another night, we shall see what it holds.  I am sure I will have a story tomorrow.

Pretty White Dress

Tatum Update:  Tatum was pretty gurgly today.  I was hoping that it would let up by church, but it didn't.  So we packed all of our equipment so if we needed it we could just run to the car and help her out.  My cute friend that found her the adorable pretty dress brought that by the other day so I was excited to try it on her. It fit perfect and was easy to get on and no buttons or zippers so it was super comfortable for her since all she can do is lay.  She looked so pretty.  We even attempted a pretty clip in her crazy mad scientist hair.  Shortly after we got to church Tatum was pretty gurgly so I strolled her out to the car and checked her sats and suctioned her.  It was kind of funny doing it out in the parking lot, but it would have been weirder to do it in the church.  The suction machine is sooo loud and the noise of someone being suctioned could have triggered all sorts of gagging among the parishioners!  I took two trips to the car and then she was pretty good.  She got pretty sleepy and I knew once she fell asleep that she would breathe and be calm.  She fell asleep and stayed asleep until about 1/2 hour before church was over.  So overall she did OK.  Some of you might be thinking, why do they bother coming to church?  Why don't they just stay home?  That would be so much easier on Tatum and everyone.  I am not going to say that it is a walk in the park getting to church, however, I know that it is where we, including Tatum (if she is well enough) are supposed to be.  I really feel like she can feel the spirit.  That may seem weird, but I want to expose her to those experiences while she is here.  We had a double missionary farewell today.  What better place to feel the spirit.  It was fabulous.  We have such great young people from our ward out there serving the Lord and setting the example of doing what you are supposed to do.  One of the Hymns we sang today was "I Know That My Redeemer Lives".  I don't think we have sung that for awhile.  It touched me to the core.  The words of that song are so beautiful and true.   He lives to bless me with His love, He lives to plead for me above.  He lives my hungry soul to feed He lives to bless in time of need.  .. He lives to comfort me when faint.  He lives to hear my soul's complaint.  He lives to silence all my fears He lives to wipe away my tears.  He lives to calm my troubled heart.  He lives all blessings to impart.  I have felt all of this.  Closing song, "Nearer My God to Thee"!!!! What.  Yep there were some tears today.  Good tears.  Tatum smiled a lot while we sang.  That's my girl.

 Tatum even wearing a bow today..

 Smiling out of the corner of her eye...

Pretty in her white dress!

Sleep the all natural drug!

Tatum update:  she had an ok day.  A little gurgly but overall happy.  She got to watch "Wreck it Ralph" twice today. I guess we can check that off her bucket list!  She also got to watch some "north and south" with dad. Poor thing. She is very tolerant of what we subject her to. She didn't sleep super good again so I was pretty tired today. I went and got my hair done and while I was under the dryer I totally dozed off!  I am like the old ladies who come in and get their hair "set". Oh boy. Things were pretty calm when I got home so after lunch we got Tates to sleep and I decided to take a nap. I got to sleep for an hour and a half!  When I got up I felt like I had the strength and energy of ten women!  I went and visited with one of our patients from the hospital.  Her son is living and adorable. He has a feeding tube and other issues so it was good to talk to them. Then I dropped Hayden off to a friends house and went and got Halea to bring her prom dress to get hemmed.  Then she found shoes and a purse.  Check and check. I am grateful for an uncomplicated daughter who can find shoes at Payless still even for Prom !  Came home and we got everyone settled for the night and finished laundry and tidying the house a bit. I even had time to sit with Tater bug a couple of times today.
It is amazing how much better life feels when I can get a little sleep. I feel like I can do what I need to with a smile. I felt like I was my normal self today. I think I was even funny and a little more tolerant. Hayden and I even got along the whole day. Sleep. Apparently necessary for life:) especially a good life.

I was really grateful for Heidi today.  She sat with Tates for a bit and made her smile...

Then she took Hilary and played with her for a few hours while I slept! She also gave her a new hairdo.  I hardly recognized her so I wanted a picture of her.  Apparently Hilary did not want the paparazzi to take her picture!  Ahh three year olds.

Six More Weeks!

Tatum Update:  We went to the GI doctor to see how Tatum's feeding tube was doing.  The doctor said it looked great and so we could schedule her button (the flat tube) for the end of May!   End of May.  Holy cow that seems like forever.  I guess she gets to be the "iron Baby" for six more weeks.  If you have never seen a g-tube it is a thick tube that sticks out about 3 inches and you loop it and tape it a couple of inches from her tube site, so it makes a big "C" that sticks out.  It just reminded me of "Ironman" and how he has to have that big protective thing around his heart, thus we call her "ironbaby".  Anyway, needless to say I was a little disappointed.  He did do the labs to check her liver and some of her other levels so that we don't have to go back up on Monday.  Great news.  Her liver enzymes are elevated but he said nothing alarming.  Such great news.   Tatum tolerated everything very well.  She didn't get too gurgly all day today and her breathing has been really clear.  They had a hard time finding a vein to do her labs today.  That is always very sad.  She hardly cried.  That makes me even  sadder.  They had a child life specialist come in to play with her and distract her and Tatum was not amused.  She eventually mustered a few smiles, courtesy I am sure.  Hilary rather enjoyed the trip to the hospital, she got stickers and got to play in the play room with dad while we were torturing Tates.  I am glad that she had a good time:)

These were a few pictures of Tatum yesterday.  She had some good smiles.

Here we are at the playroom at Primary Childrens.  Hilry may have had a little more fun that Tater bug...

What is this cheesy smile?  This is yesterday when we went to get new shoes and to get some frozen yogurt. What a cheese ball.

Fantastic Day

Tatum Update:  As the title says, it was a fantastic day for little Tates.  She didn't sleep the best, but she almost did better than Hilary, so go figure.  Hilary woke up at 2am, then again at 3am, then Tatum woke up. She was only up until about 5am, so I got to go back to sleep from 5 to 6:30.  I call that a success!  The morning went fairly smooth.  I didn't have a lot planned because I wanted to stay close to home so that Tatum could rest up for our big day tomorrow.  Tomorrow we go to Primary Childrens Hospital to get her g-tube checked.  She hasn't been tolerating car rides very well, so I thought if we let her be calm for a few days and not drag her around everywhere maybe it would go better.  We shall see if my little experiment works, stay tuned.  Tatum stayed awake for a lot of the day today.  One of my neighbors asked if Hilary could come and play for awhile so I decided to have a little outing (this went against my experiment, but I was so happy that she was having a great day!) .  We walked Hilary down the few houses and went in and had a little visit while the girls were playing.  It was a lot colder than it looked outside and windy, but Tatum did fine, it was me that was complaining.  Darn Utah spring.  When we got home, I got Tatum settled and put her little monitor on her foot and her Oxygen Sats were 99-100!  And I had even turned her oxygen down a little bit from what it had been the few days before.  She is such a little trooper.  She finally fell asleep in the late afternoon.  I went to check on her and there was her Yogabba gabba guy all wrapped up in Hilary's favorite blanket laying next to Tatum.  What a sweet sister she can be.  I love the thought that has to go into Hilary doing that for her.  I love that Hilary has a natural sweetness for her.
The other day I was studying for a lesson and I came across Alma 7:11-12.  I loved the part that it says that the Savior suffered our infirmities (that was not a requirement to fulfill the justice part of the Atonement, this was just because He loved us) so that He would know how to "succor his people".  I have seen this in our lives.  The spirit has definitely guided and directed others to help us in very specific ways, to be the Lords hands to help us in this journey.  I am grateful for that today.  I marvel at it, and don't fully understand it, but I know it is real.

Hoping that we can get some sleep tonight, and that we have a positive visit with the doctors tomorrow.

No empty chairs!

PICTURES!!!!

 Tatum Update:  There might be trouble in River City!  I think Tatum might have her days and nights mixed up!  She is pooping in the middle of the night which signals her to think it's time to stay awake.  Oh boy, this is a bad development.  She was pretty gurgly all night last night and so we just hung out together.  Then she slept from about 9:30am to about 3:30pm.  I was not about to wake her up!!! Don't judge, you would have done the same thing.  When she sleeps, she is so relaxed and her breathing is clear.  If she does this again, I will spend tomorrow trying to keep her awake during the day a little more.  Actually, I will enlist Hilary to keep her awake.  I am amazed that she can sleep at all with the little megaphone voice running around all day, but somehow Tates manages it?  Go figure.  The other update for Tatum is that we go on Friday to have her g-tube checked.  Six Weeks!  I really didn't think that she would even make it to this point, so this is a big milestone.  Love this little fighter.  She might have a little bit of her mama's stubbornness!  Unfortunately I think that Hilary does too:(  Note, the first two pictures from our big picture day:

Hilary was not about to stand where she was supposed to.  This was at the end of the shoot, I must give her that.

I will stand here, but I am not about to stop crying says Hilary.

Hilary was not super good in the beginning of the photo shoot or at the end, luckily we had a middle! She was delightful, almost laughing during some of it.  Another miracle for Tatum (or Tatum's mom really)

I think this is my favorite of our whole family.  Everyone looks like themselves and Tatum looks peaceful.

This will hopefully always remind us where we are going.  Focus on the eternities...

Love that my kids are holding hands and that Holden is laughing

This is Lance's favorite, because you can see Tatum's beautiful feet and her eyes a little bit.

Love sweet Tatum.  She is truly and angel here on earth to teach us and love us.  Love this tender time with her.  What an honor to be her mom and her family.

Grateful for Hilary who today insisted on getting herself dressed, picking out her clothes.  She said "I need to get me pants on" today.  I love the leprechaun talk!!!  I will be sad when that ends.  At some point this morning I checked on Tater bug and Hilary had put her favorite "spots" blanket on her.  I told her that I thought that helped her sleep better, and she agreed.  I am sure that blanket is a germ bed and filthy, but the love and thought that went into a three year old surrendering it for her baby sister to use for awhile made my heart smile.
Grateful for visitors today.  It is like winter here so I haven't been able to get out much in the past few days so it was nice to see friends.

Blessings Abound Even During Times of Trial

Tatum Update:  Tatum has had a pretty rough day.  She started at about 4am just gurgly and she hasn't stopped all day.  She has had a rough time keeping her sats in the 90's where they should be.  She has been having a pretty constant tick of seizures all day.  Luckily Lance stayed home so I was able to run out and do a few things that I needed to do and pick up the kids from school and have a little break.  It seemed like everywhere I went today I heard another sad story of someone in the depths of a hard trial.  The Lord was reminding me all day to just breath and be grateful for the things that I do have and not for the things I wish I had or the things that I will not receive.  I am grateful for the loving reminders that things are going to be OK.  I do still wish for relief for Tatum.  I hope that I can help her better tonight.  She seems to have a few good days and then a few bad.  Is it wrong of me to only want the good?  Selfish.  

I am so grateful for a three year old who talks like a leprechaun.  She says things like, "I need to clip me fingernails"!  or "I need to get me Dora (pronounced Dola) doll"   What in the heck - it is so cute.
Grateful for good friends and co workers that love me and my family.  I don't know how people survive without a community to support them.
I am grateful for my belief and testimony.  Without it I would be nothing.
Grateful for a husband who insists on helping even when I am resistant, and when I ask him what he is doing on the computer he is looking  up YoGabbaGabba videos for Tates, rather than porn!  (Can you imagine Lance looking up naughty things on the computer.  Stop laughing!)

There is a lot of sadness in this crazy world.  We are lucky to have Tatum here with us, somewhat protected from the storm out there, tucked tightly in with our family.  She brings us such joy.

Hopefully we will have some fun pictures from Camera Shy tomorrow.

Smiley Tater Bug

Tatum Update:  Tatum had a great day today.  She woke up at 3am, not off to the greatest start, but she went back to sleep at around 5am.  So I was able to sleep from midnight to 3 and then from 5am to 7am, and then 7am to 9am!  I was in rare form today with all of that sleep.  So I got Tatum back to sleep around 5 and woke up to Hilary coming down the stairs at 7.  Nope I said.  Lance came and got her and brought her in bed with him and she slept until after 10!  Another little miracle, Hilary is now sleeping in her big girl wunderwear at night.  I know, lazy parents.  She was always super wet when she woke up in the morning so I did not dare try and have her sleep in regular underwear.  So for the past year she has slept in "nighttime pants" aka pull ups.  She has been waking up dry for the past few weeks so I finally talked myself and her into wearing underwear at night.  Yay.
Tatum did really well at church today.  She was super smiley and just content to be there.  It was a great day.  We had ward conference and so we just got to be taught by our stake leaders.  We have the greatest stake presidency and so it was a delightful day of learning and feasting on the spirit.   I was sitting next to one of our neighbors who is Halea's age and she asked if she could take a few pictures with her phone because Tatum was being so smiley.  Let me think, yes!  So here they are:

Pretty sure this will be better than any picture that we took yesterday at the professional studio!

When we got home today we just made dinner, relaxed and watched a movie.  Tatum did really good most of the day, she only had a few times that she was a little gurgly.  I only suctioned her a little bit today.  Yay.
Tonight after we got everyone settled for the night, Lance got on the computer to finish up our taxes.  I know, we have just been a little preoccupied and so he hadn't done the final calculations.  I was cleaning up the kitchen and he just blurted out, "we owe 3500.00 to the state!"  I just knew he was joking, so I wasn't about to give him the satisfaction of reacting.  I just said, "that's a bummer" and kind of chuckled.  As I kept working, I realized that he was truly tense.  So I started thinking, really? could this be right.  Don't we get to opt out of financial disasters during this time?  Oh boy.  After a few tense moments, after further review, he had made a typo on what we had actually paid.  I was very proud of myself for not freaking out.  We both had a good laugh.  Heart attack averted.
This morning when I went up to get dresses for the girls I was getting Tatum's and I realized that I only have one dress that fits her.  She has grown out of her other dress from Christmas.  I thought "I really need to find a nice soft cotton dress that is comfortable for her".  So when I got home from church today I was reading emails and a friend had sent me a picture of a cute little white cotton dress that she was going to buy Tatum but she wanted to make sure that she needed it and what size to get.  What in the heck?  How are people so in tune to the promptings of the spirit and how in the world can Heavenly Father have the time or the patience to care about such a simple wish of a mother?  I just don't get it.  Over and over things like this happen.  I just can't ever think that we have walked this path alone.  Our simplest prayers have been answered, like a cotton dress for Tatum!
Tonight I am super grateful for typo's.  I am grateful to be able to go to church and be surrounded by good people.  Grateful for good friends and neighbors who constantly think of us when they are out shopping and check and see if we need things because they know that it is hard for me to get out sometimes.  I am grateful for people who just drop off food.  I am forever grateful for time to hold Tatum.  Sometimes she is more comfortable not being held.  Today during sacrament meeting I was able to hold her for most of it and she did really well.  Too many blessings to express gratitude for today.

Picture Day Again?

Tatum update:  Tatum had a really good day yesterday (Friday the 12th)  I am sure that it was because it was Halea's 17th birthday.  Halea kept saying there is nothing special about 17.  It is just in between "Sweet 16" and driving  and "Yikes 18!" becoming and adult.  So I think that Tatum was doing her darnedest to make it a special day.  She was pretty smiley and I was able to get the few last minute things together for Halea's bday.  We even ventured out to the porch for some bubble blowing!

 Smiley....showing her tongue

Smiley.... no tongue

 Even the dog was loving it

Some of those may have popped in her face.  It's not right to have no way to lift your arms in defense!

Good clean sisterly fun..

It was a beautiful day outside, so we thought we had better enjoy the good weather.
  It got pretty hectic towards the evening because we were trying to surprise Halea with a new phone and so I was trying to sneak around and get that working(which we never did get it working!)We had cake for Halea's birthday and opened presents.

 Hilary was very mad that she didn't get to blow out the candles, so we had to relight them and let her blow them out again!  Wow, we are weak.  We would have never done that for Hayden or Heidi.

Hilary recovered well, once the cake started flowing.....

We were finally close to going to be and getting settled around midnight and the power went out!  Seriously?  I just wanted to go to sleep.  As soon as the power went out the oxygen concentrator machine started beeping.  Are you kidding me?  All of her accessories have battery backup except the oxygen.  Tell me how that makes sense!?  We remained calm, found a flash light and hooked her up to the portable oxygen tank.  It was just a funny way to end another hectic day.  Sigh....The electricity popped back on about 1:30am and we got her all settled on the oxygen machine again.  Things we take for granted, like breathing and stuff.  Not Tatum!
Tatum woke up at 4am, which is sometimes normal for her.  We just sort of hung out together until around 6:30 Lance came out so I could start pulling everything together because it was picture day!  I know you might be thinking (like Hayden was thinking) Didn't you just have pictures?  Yes we did, but we might just have them every month!  Do I have to keep explaining what is going on here?  Anyway, I just wanted to go to the place that had taken such cute pictures of her in the past.  I just needed some cute studio pictures.  I am afraid that she is not going to be able to smile much longer.  She was so smiley yesterday, today not as much.  And, Hilary, sweet Hilary was in a three year old funk!  She was ridiculous.  She did not want to do anything that those poor ladies wanted her to.  So we have Tatum who can't hold her head or smile and Hilary who is throwing stink eye at the two ladies every time they talk to her and the rest of the family who doesn't want to be there.  It was pretty awesome!  Tatum's seizures were still a little bit in her face so it was hard for her to smile.  Darn it.  These guys are pretty good though so hopefully they got some good ones.  I will post them on Tuesday.
The rest of the day was a little crazy.  As soon as we got home from the pictures I ran up the canyon with a few ladies for a girls camp meeting.  Lance took Heidi and Halea to the daddy daughter bowling function.  When I got home the kids told me that my friend from work had come and stocked our fridge and pantry with all of our favorites from Costco, and brought two DVD's for the little girls.  One was YoGabbaGabba!  Tate's favorite.  My house was a little pitty when she came, hope she doesn't judge to harshly.  So at least dinner was done for the day, yay!!   Another tender mercy sent our way.  When I got home from my meeting Tatum was sleeping with her little YoGabba Gabba stuffed animal that I found:

I have been a little sad the past few days because I was flipping through pictures on my camera the other day and I came across several pictures of Tatum before she got sick and some just a few weeks after she got sick and the difference of what she is now is startling.  The brightness in her eyes is just different.  It hurts my heart to see how progressive this hideous disease is.  Alper's disease just stinks.  I still know that there are lots of things out there that are way worse than what we are going through, but my heart is still sad.  Even with the knowledge I have I am still human.  I love this little baby and I was so set on her being my little buddy.  I keep thinking what will I do when Hilary goes to school in 3 years?  Oh I am sure I will find something to do with myself, I just wanted to be Tatum's mom.
Grateful for a good husband who is letting me do family pictures every month and not questioning me every time I bring home a new pair of jammies or stuffed animal etc. for little Tater bug.
Grateful for our Savior who suffered all things so that He would know how to bless us in times of need, and He has.
Grateful the daily reminders of His love for me.
Especially grateful for Tatum's smile and the early morning time that we get to spend together.  I love serving her and taking care of her, what an honor.
Wooo, sorry so long today.