A letter home:  Dear Kinzers, you would have turned 7 months yesterday.  I know your work up there is very important so I won't keep you long, but wanted to let you know we think of you every minute!  :-)  We planted some pink flowers at your grave.  You looked pretty darn cute in pink...and purple...and red....ok, you looked good in anything.  Your siser was dancing around the house with your picture the other day and even turned the music up so that "Kinz could hear."  Love you always, mommy, daddy, and Emma

Too Hot!

Although not ready to come home yet, we definitely miss the dry Arizona heat vs. the muggy Houston heat.  After my parents tried to get some yard work done at 2 in the afternoon, my mother decided to let Emma cool off Grandpa.  She was thrilled to oblige! 

Very excited to use a squirt gun and....

...very efficient!

Of course she did have this example

to learn from!

It all ended with a yummy treat in the
"shade" where its not any cooler at all! 

Trip to Blue Bell

We have been staying busy here in Houston.  We took a trip to Brenham to the Blue Bell Ice Cream Factory and took a tour.  It was the perfect length for Emma.  She rode in teh stroller so patiently in the hallways between windows and was so eager to push her nose up to the glass in the rooms.  She loved watching them dump in giant buckets of strawberries!  At the end she of course got her free scoop and wanted Chocolate until she saw the "yellow" one.  It was so sweet.  Even Emma couldn't finish it!

A letter home

Our sweet sweet Kinzie.  I can not accurately express how much we miss you and what a void your passing left in our home.  But as we try to see past the void, the hurts subsides for just a minute and the light of memories from your short life shines through.  Tomorrow the hurt might subside for 2 minutes and so we press on.  We miss you, love you, and await our reunion.  Say hi to the family up there and drop us a note from time to time. 

Love your mommy, daddy, and big sis Emma!

Our Little Angel

Kinzie Danielle Allen

January 22, 2010 – July 3, 2010

Snowflake, Arizona

Our little ‘Kinzers’ came to us for a short time. Her mission was simple. She came to teach love and strengthen those who knew her. During her short 23 weeks with us, Kinzie endured many hardships but still learned to smile and laugh. Kinzie was a snuggler and everyone that knew her couldn’t help but love her. Her fight began during a blizzard. She was quickly transferred to Phoenix and became a fast favorite among the nurses and doctors at Phoenix Children’s Hospital during her 53 day stay. Her coping mechanism was faking out the doctors by feigning sleep…complete with a peek to check if they were gone. Her few months at home were filled with happiness despite numerous complications. Her sweet spirit and personality brought happiness to us all. She is sealed to her parents and sister and we know we will be reunited with her in time. We will miss our cuddle bug but know that she is in her loving Heavenly parents’ arms.

Kinzie is survived by her parents Cale and Kara Allen of Snowflake, sister Emma Allen of Snowflake, grandparents David and Lora Allen of Joseph City, and Scott and Rozanne Young of Spring, Texas. She is also survived by numerous aunts, uncles, and cousins.

A viewing will be held at Owens Livingston Mortuary on Thursday July 8, 2010 from 6-8 P.M.  Funeral services will be held Friday July 9, 2010 at 10 A.M. in the Snowflake Main Street Chapel of The Church of Jesus Christ of Latter-Day Saints located at 1st North and Main Street in Snowflake. In lieu of flowers, donations are being accepted in Kinzie’s behalf.

My Girls!

I wish I could say that Emma is always looking out for Kinzie's best interests but almost always would be pretty accurate. When we are in the car and Kinzie gags or cries, Emma always leans way over from her side and says, "Baby Ok Mom" or "Baby throwing up Mom, StoP!" She loves to hold her and every now and then still tries to pick her up when I'm not looking. She loves to lay on the floor by Kinzie and be "snuggle buddies." Today though was the best. It melted my heart. I was replacing the tape on Kinzie's face and Emma took the spare pieces and "wanted to be like Kinzie." I told Emma today that she is going to get to teach Kinzie everything she knows. Emma started to sing the ABCs very out of order, but very cute.

My Creative Emma

We get VERY bored being cooped up inside unable to get out much and without a yard yet to play in we have to get creative. Emma decided today to make a play-dough swimming pool with lawn chairs and she invited Granny, Papa, Daddy, Mommy, Kinzie, and Mr. Scratchy Face. She also made them some beach balls to play with. I of course helped but she concentrated so hard.

We also love water. Emma loves to play out in her pool but with all the wind we have been having it makes it too cold, believe it or not. So we often take swims in the tub. This was an actual bath but same thing. She is a very caring little girl. Look at the care she took to give each bear a pillow and blanket...and the butterfly too.

We also take every opportunity to get outside. So we took the girls to the ward campout. It is out at a place with a big cabin, a zip line (emma too small), swings and the Mega Swing! Emma loved the Mega swing adn the chocolate icecream. The combination did eventually cause her to throw up multiple times the next day but that didn't stop her. We actually had to pack up camp at 2 am to get to the hospital to see Cale's mom and left Emma with some friends who took her back to the camp and Mega Swing!

Unwanted visitors

We have had some unusual visitors to our backyard this last couple of weeks. Cale woke up a few weeks ago to find this little guy 15 feet from our back door. Then Emma woke me up today to tell me that there were bears in our backyard. I went to the door and saw 3 of these things! I immediately woke up Cale and said what the heck is in my yard. They ran away before he saw them but I told him they looked like black warthogs. He said they are called Havalinas and are wild. I looked them up and they are actually distant relatives of the Hippo, not pigs!

Update on me

Many people, family, friends, doctors, nurses, fellow employees, all ask me how I'm doing. They get the same answer that I give when someone asks in passing how Kinzie is doing today - fine. I'm not trying to blow people off; I just truly don't know how else to answer. I'm sure they don't want to hear what I'm really feeling and so for lack of a better word, I say "fine." My good friend Jodi, who has an 8 year old with Aicardia (sp?) syndrome has had 8 years to figure out this answer and posted these two sources. Chronic sorrow accurately describes my feelings these days. Some days I rejoice in seeing other babies growing and developing and other days I simply turn off the computer and hide inside the house trying not to cry because my baby doesn't do that. "Welcome to Holland" is a great short story (very short, please read now) that also shares how I feel. Please read it before continuing to read this post so that you will better understand the feelings that follow below.

Everyday is a constant struggle to just suck it up, realize that life will never be what I thought it would be and to make the best of it vs. Satan's effort to sink in despair and saddness. I truly believe that certain spirits were so special in the life before this that Heavenly Father did not want to risk them not returning and/or that other spirits were so righteous that they need not come to this life and be tested as the rest of this. Regardless, I also know that I will get to see my little Kinzie perfectly healed in the next life and that she will be exalted on high! Having said that it doesn't take away the mortal feelings of hurt and saddness that she is missing out on the opportunities of this life that Emma for example has. It also doesn't take away the hurt of missing milestones that other parents get to enjoy with their baby and child. I love my little girl with all my heart and am so glad that she survived and I know that she will continue to teach us a whole new aspect of love but I know it will take time since I am human to continuously see the better side of our situation rather than the glimpses I get on a good day when I'm feeling up to the task. So in an effort to answer the question, "How am I holding up" I hope this helps to understand just what "fine" means to me these days. Thank you everyone for helping us through this.

Oh my Emma. You crack me up! I came into find Cale feeding Kinzie and Emma doing this over and over. Brett and Brittany I thought you'd appreciate the music. Too bad Emma wasn't around yet to give you these moves for your wedding day!

Sodium Up Finally!

After months of plummeting sodium levels, her Monday lab was finally up and up a lot!!! She had previously been 121. Our critical threshold is 120 and lower, especially 110 and lower. So I've been watching and waiting to hear that we were beneath 120 but finally the salt supplements are working! She is 128!!! Normal is 135. So hopefully, this will continue to there and then we can work on finding the balance to keep her stable but not continually increasing! Who would imagine that an American needs salt supplements to their diet!

Eye Doctor Update

Ok, before giving the diagnosis from the eye doctor let me first say how nervous I was to see yet another new specialist. You never know if are going to get the doom and gloom pessimist or the optimist or something in between. I LOVE her eye doctor, Dr. Cassidy. He was amazing. His office staff makes you feel like you are at a resort with their manners and service. His kindness for Kinzie was so genuine. The whole time he was telling me the diagnosis I kept thinking "ok, remember that term" and he kept telling me "Don't worry, we'll write it down." And literally, his assistant was standing right there writing it all down for me! Then they mail me the formal diagnosis with a definitions page as well as send it to her PCP and appropriate foundations. I left so informed and organized!

Ok, for the diagnosis. Optic Atrophy, Cortical Visual Impairment, Nystagmus, and Hyperopia. Wow! What does all that mean. Basically there is some nerve damage to each eye from the HIE hit in utero. Both eyes are far sighted. The damage is on a scale of 0 to 4, 0 meaning no damage and 4 meaning blind. Her right is a 1 and her left eye is a 2+. However, the damage may not all surface until up to 18 months old so it's a weight and pray game that it's not worse that it appears.

Treatment: stimulate, stimulate, stimulate. Her eye rolling is basically her way of saying overload. The nerve is very long and the info basically gets lost along the way. With practice her brain may be able to reroute or concentrate enough to get the signal all the way to her eye, brain, and back to her eye. We'll return in 2 months to look for improvement or worsening.

I know this is pretty short but it was the best I could get on tape. Kinzie started smiling today and then she started laughing and once she started she couldn't stop. She was sleeping the whole time or at least her eyes were closed and she appeared to be sleeping. She must have been dreaming about what a good mommy she has! lol

Update

Kinzie and I came down to the valley last night for 5 appointments today and 1 tomorrow.

1st: Occupational Therapist for splinting of her hands. Her hands are very wind swept outward and need to be straightened at the wrists and the fingers. Also her thumbs tuck in her fists rather than outside of her fists so the splinting will stretch those muscles and help them to extend. Meg was the OT who saw her PCH and generously fit us into her schedule. It took hours to get it right and Meg just kept working at it. Thank you Meg!

2nd: Neurological Psychologist for evaluation. Kinzie was sleepy but cooperative. The developmental diagnosis is still out until I get some of my forms back to her.

3rd: Modified Barium Swallow test. She was not very cooperative for this but did show that she was still safe to nipple "thick" consistencies and so we will begin trying to get her to take a bottle again.

4th: GI. We have been waiting for this doctor for months now and I finally left GI not in tears. Unfortuantely Kinzie has not gained weight this last month and is still 11 pounds 9 oz. This puts her at the 5th percentile for weight and also is at 5th for height. She is at 50 percentile for head circumference though so the brains are growing! lol

We made quite a few changes her and pray they will help her to gain some weight and grow. We will increase NG feeds from 22 calories 9 times a day to 26.4 calories 10 times a day. We have to be careful due to her SIADH and not add too much extra fluid so just extra calores. We will continue to add 1/2 tsp salt for the day to help sodium loss from SIADH. We will also start her on a Rx for Lachulose (sp?) to combat her constant constipation. This seems to restrict the volumes that she can handle and so if we can keep her regular maybe we can increase the volume some. This will also alleviate the need for adding Karo to each bottle. In addition we will try thickening bottle feeds with gel rather than Rice again to minimize the constipation.

5th: We visited Pulminology to assess the need for the Apnea monitor and the O2 battle between docs. (My doc up North says not necessary, PCH says it is). PCH won. We will be back on O2 for 1 more month and will thus continue the Apnea monitor for one more month.

Tomorrow we see the Eye doctor. It and the swallow test were my main goals for coming. we had hoped to see Nephrology for SIADH too but couldn't get in so maybe next month. I'll update you on the eye doctor tomorrow.

Thanks to all our great supports. I was able to see all my Primary nurses and doctors this visit and it was a great reunion. Also the best news of all....Kinzie started to smile and laugh today and all day! I have pics and video on my phone and will work on getting that on here! I have been waiting for this day and hearing for so long that it may not come. Well....it did. I think Heavenly Father knew that I needed something to go on to keep my faith up. It worked. I know my little Kinzie is a fighter and I know that she can learn and grow. We will just keep working at it!

Emma's First Camping Trip

Emma loved cmamping! I have never seen a dirtier girl! She loved not having to be clean and able to make a mess.

This is a 4 man tent which usually means a 3 man tent but heck we crammed two adults and one toddler on the air mattress and Kinzie in the corner in her car seat. We were all very warm and pretty comfortable. Emma was especially comfy and warm and slept soundly...until the sun came up at 5:30 am. I introduced Emma to the camping hair style... or lack of!

We had a great spot right on the creek, surrounded by trees, but too close and downwind of the potties! I'm the only one with a sensitive nose apparently.

Even Kinzie loved camping! The early morning got a little cold but she was well bundled in a little cocoon and was probably the warmest...or second to Emma maybe.

We of course roasted our Smores which Emma liked for a few minutes...but then decided it was much easier and faster just to eat the marshmallows and cookies raw and separately!

Uncle Chris and Aunt Lisa came to visit this weekend. We sadly forgot to get their pictures with the girls. However, the girls had fun all the same. Uncle Chris generously bought Kinzie her much needed Bumbo seat to help strengthen her muscles and encourage her development. You can see that she likes it, fits well, and is very much alert. Emma was invited to swim at the hotel which she called Chris' pool. She wore this all day in excitement for the blessed event! She needed a new suit so we splurged a little and got her a Hippo floatie and arm floaties.

We forgot to get pictures at the pool but surprisingly it took an hour of her getting in and out very timidly before she warmed up and wanted in all the time! What did it...the arrival of kidz as she calls them, of course.

Thanks for a fun weekend Chris and Lisa!

Who would know that vacuuming could entertain her for so long? lol She has always loved to watch me vacuum from the couch or the bed... She has always been a little afraid of it. But this day I said we needed to clean up to vacuum and she hopped to it and then wanted to vacuum with the wand. She stayed with it till the job was done.