Sierra Updates

Sierra had a MRI and ABR hearing test Friday morning at Primary Children’s.  We have not heard the official report from her MRI but her ENT told me that the report stated that there is less fluid on her brain then the previous MRI and there are no pockets of fluid.  The best news is that she passed her hearing test 100% which is really quite AMAZING!!!!!!!!!  I couldn’t be happier.  Ever one, but Brandon, thought she had some hearing loss.  I think that with all of the ear infections she had did contribute to the hearing loss but if tubes stay in like they should then her hearing is perfect. 

Ever since Christmas Sierra has been doing REALLY well in therapy.  She had not progressed much at all during the year of 2013 and I was concerned.  Speech has been especially bad.  I had just talked to her speech therapist in December about possibly adding another day of speech therapy (ugh) because she wasn’t willing to try sign language and she wasn’t picking up on speech at all.  I was very concerned.   Then one day it’s like a light turned on inside of her.  Everyone is amazed at the progress she has made ever since Christmas.  Brandon remembers the neurosurgeon telling us that after her brain is done healing her development will start to speed up noticeable.  We both think her brain was done healing around Christmas because of how much progress she is now making.  It took 6 months for her brain to heal from all of that trauma.  The trauma of the cyst growing and moving her brain and then the trauma of the surgery and her brain readjusting.  My Sierra is truly amazing.  I don’t blame her for not wanting to do anything for 6 months (or more).  It has taken me longer than 6 months to heal from her surgery and I still feel like I’m trying to heal from it.  Let me list the ways she is advancing in development.  Literally all of the stuff happened at once.  Every week she is doing something new, and she is speeding up in speech therapy the most. Erin her speech therapist is so happy with Sierra right not.

Speech Therapy:

     Sierra is now signing: Eat, Drink, Bath, Wash, Music (Sierra loves music), Go, Bubbles, Cookie, bed time, please, more and All Done.  Sierra understand A LOT more sings but they are harder for her to do.  Mommy, Daddy, book, baby, stop, in, blocks, ball, toys, kitten, puppy, (other animals).

     Words Sierra is saying: Dadda, Ready Go, What, and all done.  She is mimicking words like Diamond and a few others. 

     Other Speech Therapy Stuff: Erin is working really hard on her attention.  She tries to read a whole book with Sierra and have Sierra respond to questions and point to pictures like animals.  Touch and Fell books are really great for this.  Erin is teaching her body parts which Sierra is doing great at. She knows her nose, head, eyes, mouth, and tongue.  I think she knows more like her toes, fingers, and ears BUT Sierra is SOOOOO shy and doesn’t like to do it.  Erin is also trying to teach her commands like “Put In” “On Top” and stuff. 

What has been so amazing is that Sierra literally was NOT doing any of this AT ALL until about January first and then she starting doing it all at once.  It was slow at the beginning (in January) but Sierra is picking things up weekly now when it had taken her 6 month to just sign the word “eat”.  Erin was kind of giving up on Sierra because she was not doing ANYTING.  She was very frustrated and kept saying let’s just try to get her to listen for a few minutes.  Or just respond to her name.  Maybe I’m asking too much of her.  Erin is frustrated but now she is so glad she did not give up on her.  She loves working with Sierra now and feels like all the frustration was worth it.  It was!!

PHYSICAL and Occupational THERAPY: Sierra started to crawl on her hands and knees really well starting in December (instead of the army crawl) and now is finally standing with NO problems and doesn’t cry when she’s standing.  Sierra is also easily going up and down stairs.  Corwin has been working on this since last spring but she wasn’t getting it. Then one day around the first of January she just got it!!  It was incredible.  We were shocked.  She is pulling herself into kneeling AND standing positions also.  Just one day BOOM she had it.  Her therapist are working very hard on walking but Sierra is so afraid to move while standing.  Her fear holds her back more than anything.  Cade, her PT, pointed out how Sierra would come and just sit until they made her move but now she comes into the room and roams all over and kind of takes control and he LOVES it!  He loves the changes in her. 

Babysitter:  One of the biggest blessing in my life has been Sharlene Bitter.  She is Cameron’s new babysitter.  I have cried many, many buckets of tears (which my mom can attest to) because I have needed so much help with Cameron so I can take Sierra to her Dr. appointments and therapy (which is four times a week) and I have had such a hard time finding help (that doesn’t include other family appointments, shopping, or other needs).  Sharlene is so sweet, so kind hearted, so willing to help, and the best part is that she has a son Cameron and Sierra’s age and Cameron LOVES to go to their house and play.  Sharlene has been a HUGE blessing in my life.  HUGE.  Another testament to me that we are were our family is supposed to be. 

I still get very emotional when I talk about Sierra and all the struggles we have been through and are going through.  But she is worth every single one of them.  She is beautiful.  She is happy.  Because her heart is so pure you can’t ever get mad at her or frustrated with her or ignore her contagious smile.  She is an angle sent to our family.  She is perfect. 

My back is getting worse.  I was hoping that the problem was our mattress and that it would go away with a new one.  So we got one, but it’s not going away.  My back still hurts really bad and is getting worse.  I’m going to schedule a doctor’s appointment this week.

Today at church the lesson in Sunday School was on Moses and when The Lord told Moses to preach to them but Moses said to God “I am not eloquent, neither heretofore, nor since thou hast spoken unto they servant: but I am slow of speech, and of a slow tongue” and then the Lord rebuked Moses and told him that He will give him the words to say and make him what he needs to be.  When hearing this in class I couldn’t help but think of my situation with Sierra and how I feel that I’m not giving enough to help Sierra and that I’m not strong enough either.  I feel like I’m not qualified to be the mother she needs even though I try my hardest.  I felt the Spirit council to me that if I would just lean on the Lord and ask for help he will give me the strength, he will guide me through therapy’s, he will help me be the mother and help me know how to provide her with the life she deserves.  I just need to lean on the Lord and he will make me strong enough.

Sierra LOVES LOVES LOVES water

 



 

Pictures of Our House

Here They Are . . .
I've been asked for pictures and I finally found the time to post them.  Even though building was such a headache and we HATED the process and we even said at one point that we are going to turn around and sell the house, we are now IN LOVE.  We love our house.  We love where we live.  We don't want to move ever again. At least for right now  .  .  .

Sierra and Therapy

Sierra has been excelling at physical therapy lately.  I think she really struggles when she does speech therapy and then goes into physical therapy because her speech therapist makes her so mad.  Well, her speech therapist was out of town so she only had physical therapy on this day and it was a really good day.  She stood up on her own for the first time.  It was AWESOME. Here is a video of her doing it.  It doesn't look like much but it really is!!

 All on her own she grabbed the bar and pulled herself up. Both Cade and I were astounded.  Because she was in such and good mood and doing everything without crying he decided to put her in this "contraption" to see how she would do; we both expected her to scream because the last time he did she screamed bloody murder the whole time

These are the pictures from that FIRST time

Head Down Crying

 

Terrified and Upset

 

Spitting at Cade letting him know she's very unhappy

 

We were wrong.  Here is a video from her first walk.  We were surprised that she knew how to move her legs in rhythm.  YEP, our baby girl is going to be walking soon.  We are all so excited and happy.  Miracles do happen.

Here she is walking . . . well learning to walk and happy about it.

Sierra, an Update

It's been a long time since I have posted anything about Sierra and I feel that it's time so family and friends can know and understand what's going on with her and her struggles. 

There were many ups and downs after Sierra's arachnoid cyst was removed.  The CAT scan taken a month after her cyst was removed did not look good.  There was more fluid on her brain again.  Her surgeon didn’t want to put a shunt in because she was showing no signs of pressure on the brain (which was bewildering to him) so he said let’s give it another month and see how it looks.  That visit kind of broke me and Brandon.  We were very upset, a little depressed, and expected her to have a shunt placed to drain the fluid after her next CAT scan.  I kind of pushed it all out of my mind because it was so upsetting. After a month I took her to the hospital for a CAT scan and waited to hear from the surgeon.  When he called back he said that there was a little more fluid then the month previous and he wanted to watch it for one more month and then he would make a final decision.  I came to the conclusion that she was going to have a shunt and I just needed to expect it.  Brandon became depressed.  As the time approached I started to make arrangements for me and her to be gone the next week for surgery.  After her final CAT scan I called multiple times and when his nurse called us back she said that he did not have time to look at the scan today but would look at it first thing in the morning, so you can image my surprise when a nurse from the Pediatric Center called in the evening with a report.  When I answered the phone she jump right in and said “Mrs. Peebles the CAT scan shows that there is less fluid on the brain then the month before.  I was sitting at the table doing homework with the kids and was a little confused so I asked her to repeat herself please, so she did.  The next time I didn’t believe my ears, literally, so I said to her, “Let me make sure I understand you correctly, you are telling me that my daughter has less fluid on her brain then the previous month?”  Which her response was “Yes, she has less fluid”.  I then told her thank you, this is incredible news which she then realized how important this phone call was. 

 
The surgeon called the next day and told us the same news and said that it looks wonderful and he would like to see her in January and he would like her to have an MRI of the brain to get a really great view of the brain to make sure there are no other pockets of fluid.

 
So . . . Sierra is finally on the mend and starting to feel a whole lot better.  We also noticed that she is finally starting to sleep through the nights.  We think that the pressure on her brain really affected her, especially her sleeping habits. 

 
THERAPY:

 
After her surgery she started with speech therapy, physical therapy, and she is still seeing Corwin for occupational therapy.  Cade is her physical therapist and he is really great to her.  He grew up with a sister whom was born with a disability which was never diagnosed so he has a really big soft spot for children like Sierra.  I can’t say this to him but there is so much true Christ Like Love in his eyes.  He hates to hear her cry though and has a hard time making her do things that make her really mad.  Corwin told me that Cade came to him after the first few times expressing how hard it was for him to make Sierra cry and wanted to know what to do.  Corwin told him that the only way to help Sierra is to make her mad.  He then told him how Sierra often threw up during therapy with Corwin when we first started to see him. 

 
Sierra can crawl on her hands and knees but prefers to army crawl.  She started to pull up on her knees a few weeks ago which is a really big step.  Cade is really trying to help her walk.  We have a goal of her walking around furniture by her birthday.  I REALLY hope this will happen.  Because of her minimal depth of field she has a great fear of heights.  It was scary for her to put her hands on the ground and go from sitting to laying because of that fear.  Her fear keeps her back more than anything else.

 
Sierra sees Erin for speech therapy and she is AMAZING!!!!  Erin has diagnosed Sierra as EXTREMELY STUBBORN.  I will have to admit that I was shocked to see this side of Sierra come out in speech therapy.  Her peaceful temperament hid her stubbornness very well. 

 
During therapy Erin pulls out some toys and will only give then to Sierra if she asks.  Sierra knows the signs for “more”, “all done”, and “eat”, but she refuses to sign for “more”and “eat” and the more we ask her to do it the more she refuses to do it.  Erin has become quite frustrated.   Sierra will only sign “all done” when she wants to be done with something.  We are also working on word recognition and following direction. 

 
Corwin still comes to our home and is working with Sierra on the stairs.  She climbs up two stairs and then goes down them.  She is also working on eating with a fork.  She prefers to eat with her hands. 

 
It has been really hard to add these other two therapies into our family’s schedule.  I get really frustrated sometimes because I feel like I have no one to help me.  I had a really hard time finding someone to watch Cameron so I could take Sierra during the day on Wednesday’s.  I basically had to guilt my neighbors into doing it telling them I couldn’t find anyone else.  At first she said no and then she called back and told me her husband said he would do it.  I was really nervous about them watching Cameron because he is really busy and a lot of work.  I warned them that he likes to escape outside.  I was really, really worried that something would happen to Cameron while I was gone and then one day something did.  I came home early from therapy because Erin was sick and cancelled and when I pulled up Jarred came running up to the car and told me that Cameron has been missing for 20 minutes and he can’t find him anywhere.  I called 911 and Brandon and started to panic.  We found him down the street in someone’s yard a little bit after I got home and he was ok.  I cried about it to Brandon saying that I can’t take Cameron anywhere because he will never make it to his third birthday.  He needs to be babysat in our house where he is trapped inside.  But logically it can’t happen.  If I refuse to leave Cameron with someone then Sierra doesn’t get the help she desperately needs.  Can you understand my frustration?  I sometimes feel like complaining to the Lord asking why he gave me this trial and didn’t give me anyone to help me. When I vocalized this to my dad he said “Well look at it like this, your neighbor did agree to babysit when no one else would and the angels were watching over Cameron when he went missing.  I don’t know.  It’s all about perspective and being grateful for the help we do get, but I need soooooo much more help and I feel like I’m drowning sometimes.  Brandon has had to help me four times in the past two weeks during work and the last time he expressed his frustrations and how it’s effecting his work.  I don’t know what else to do.  Do I cancel important doctor appointments for Sierra?  Do I cancel therapy?  The last time I went down to Utah we couldn’t find any help so Brandon called his Grandmother who was sooooooooo generous to come down and babysit Cameron so Brandon could go to work and I could take Seirra to Utah.  I hope that when we move I can find someone to help me because I really need some help.

 
Aside from all of her disabilities Sierra is EXTREMELY happy and healthy right now.  She loves when anyone will sit with her and give her attention.  She is becoming a big time mommy’s girl.  Whenever I walk into a room she gets excited and comes over to me and wants me to hold her.  Though life is harder with her, I can’t imagine my life without her in it.  Sometimes others can be too focused on “perfecting” and think that true happiness only comes through perfection (perfect house, perfect body, perfect children, etc.).  What I have learned is that true happiness comes through the imperfect things in life.

Porter's Birth Pictures

My really good friend Ali had her baby and as a baby gift I went to the hospital after Porter was born and took some pictures for them.  I think they turned about beautiful.

THIS ONE IS MY FAVORITE!!

I love how Brad is holding Porter's head, he just had to touch him :)

Making Cookies with Nina

Fall Flag Football

Today was Conner's first football game.  Before the game began I didn't expect that there would be much of a game to watch where this is the first year a lot of these boys are playing but boy was I wrong.  Every single one of the coaches boys knew exactly what they were doing and they were good.  Conner having only been exposed to football three times in his life was a little lost at first.  Then he started to understand a little more but had a hard time keeping an eye on the football with so many boys on the field.  It was a little rough, but really I was so proud of him and most importantly, he had a lot of fun.  He likes football.  Hopefully in the next couple of games he will get a chance to be a bigger part of the plays. 

The fathers were so into the game, all of them huddled together on the side lines.  Apparently one of the coaches from the other team became mad and started saying some mean things when one of our coaches, whom is a very kind seminary teacher, went up to him and talked him down.  I stated to Brandon at the end of the game that they don't keep score and he responded "they don't, but we do".  Man, dad's can be very intense with their boys.  The game ended 5 to 3, us.  Their team name is "Cougars" and their color is navy blue.  Dad and Catherine, you would be so proud.  I love watching sports.

Our house is coming along . . . slowly.  That is fine with me because I have not had any time to pick out colors and such.  They finally started to frame our house last week.  Here is a photo.