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.

Potography: Mel's Baby Girl

When my friend Melanie found out she was pregnant, she asked if I would take pictures for her when they were in the hospital.  I was excited to do this, even though I headed over to the hospital at two o'clock in the morning. 

What a special moment to capture on camera.  I wish I had pictures like these.

 

 

 

 

Sierra: Bad News

Taken while waiting for her MRI.  She loved rocking.  Guess What she's getting for her birthday??




Sierra had a MRI and three doctor appointments last week.  Her MRI was first and it went REALLY well.  They didn't have to incubate her so when she woke up her throat wasn't closing off like it usually does.  She was hungry and mad which is always a good sign :)

A few hours later that day she had a hearing test done to see how her ears are doing with the ear tubes that were replaced last month.  She didn't pass . . . either ear.  I was surprised; but when they tested her to see if she responded to the sound of voices she passed that test.  We aren't really sure what to make of this.  Her left ear tube was clogged which can cause hearing loss but her right ear was not clogged.  Right after the hearing test we met with her ENT.  When he walked into the room he asked if I had talked to anyone about her MRI, which I hadn't.  He then stated, she has a tumor which is blocking the fluid from draining.  When I heard the word tumor I was horrified and a little confused.  He also told me at this time that he was able to see her cochlears which are slightly miss shaped and he didn't know if this was going to effect her hearing or not.  He then looked at me and asked if I understood.  I responded by saying "so she has a tumor somewhere on her ear which is making it so the fluid can't drain out of her ear?"  He said No which I responded, "I don't think I understand".  At this point he finally sat down and looked at me.  He said "She has a tumor on her brain which is blocking the fluid in her brain from draining.  The tumor is on her brain, not her ears."  Brandon was not with me, he couldn't come down this time.  I didn't know what to say or do.  I was not expecting anything like this at all, especial from her ENT.  I literally said to myself count to 10.  1 . . .2 . . . 3. . . breath . . . 4 . . . 5 . . . and on until I gained control of my emotions.  He was her ENT so he couldn't answer any of my questions or tell me what we were going to do so I pushed it aside while I sat through the rest of the doctor appointment.  He cleaned out her tubes and looked at her ears.  He did notice that her throat sounds really rough right now and was a bit concerned.  He said to come back in 6 months to have her ears checked if there are not problems .  Come back in 6 weeks if her throat doesn't sound normal again. 

After I left I walked outside of the hospital and called Brandon.  I almost didn't tell him about the tumor because I literally had no information and her appointment with the neurosurgeon was the next day; but I couldn't hold this kind of information inside so I called him and when I started to tell him what the ENT said I couldn't get it out because I was so emotional.  He was upset and decided to come down for her appointment with the neurosurgeon.  Needless to say I was a wreak the rest of the day.  In fact so much so that when I stopped to get us some dinner I accidental left the keys in the car and locked it.  I had to call 911 to have an officer come and unlock my door.  It was a horrible day and I don't think my eyes were dry until I finally fell asleep that night.  About 8 pm I received a phone call from my grandfather who was in the lobby of the hotel with my Uncle Max.  They asked if they could talk with me.  My mom had called them and told them I could use a blessing.  I felt slightly embarrassed because I was still very emotional but I was so grateful.  Not just for the blessing they gave me but for the love I felt.  It is VERY hard for me to go to the doctor appointments alone but when I receive bad news alone I become very emotional.  In my mind I was thinking about Sierra dying because brain tumors rarely ever turn out OK.  In fact, my next door neighbor's daughter died of a brain tumor.  During the blessing my grandfather said over and over and over that the Lord knows who I am and knows our situation and loves me and loves Sierra.  He knows us and has not forgotten me.  I really needed to hear this because there have been many times during the past two years when I've wondered if the Lord has forgotten me.  After the blessing I felt so uplifted and I knew that I could handle whatever we were going to face but most importantly I felt like everything was going to be OK.  I am so grateful that my Uncle and Grandfather took time out of their busy schedules to come to my aide.

Brandon met me on my way to the hospital the next morning.  When the neurosurgeon came in he cut right to the chase and told us that Sierra has an Arachnoid Cyst on her brain which is blocking the fluid from draining which is causing her rapid head growth.  Brandon nearly started jumping for joy because it was a cyst NOT a tumor.  But the surgeon wants to drain the cyst as soon as possible.  He said it was rather large and he was very surprised that she's not effected by it.  He was acting surprised that she is moving, crawling, and happy.  We told him that we have a family vacation we were going on next week.  He was hesitant and then said, "well lets get a list of children hospitals in the area just in case anything happens."  At that point I decided that we were going to have to postpone our vacation to my parents house.  My older kids are soooooooo disappointed.  Kaylie cried about it for days.  The surgery is scheduled for July 8th.  Sierra needs to the at the hospital July 7th for blood tests. 

After this appointment we met with her eye doctor for the post surgery check up.  He said that it worked perfectly.  Her eyes are working together now which is what he was going for.  He told us that now her eyes will start getting stronger so over the next long while they will straighten out.  I was so happy to hear this.  We are noticing that her right eye is getting stronger every single day.

I have been on a lot of ups and downs over the past week.  When we came home after all the appointments I kind of went into a depression.  I was just so, so, sad about the arachnoid cyst, even though I'm happy it's not a tumor.  I also feel a lot of guilt for not taking her in sooner. The doctor said that surgery only works about 50% of the time.  Best case scenario Sierra will be in the hospital for 3-5 days after surgery as long as there are no other complications.  He said that this is a long process and that surgery is the first step.  I felt weird being around other people because I felt like my life had come to a stand still.  I felt like my world was spinning but everyone else's world wasn't.  I felt like there was a big elephant in the room that no one would confront.  I tried to act normal but I had a really hard time being normal.  I still get emotional when I tell others, but I'm doing so much better now.  Partly because I am reminded over and over how amazing Sierra is.  Seriously amazing.  Brandon is also wonderful for me.  He's such a rock.  When we thought she had a tumor he told me at one point "I want to raise her.  I don't care that her life will be harder, I want to raise her."  I don't know very many men as wonderful as Brandon.  I am so lucky to be married to him.  When I told a friend of mine about Sierra she put her arms around me and instead of telling me "I'm so sorry" she told me "I know you can do this because you are so strong and Sierra will be OK.  She will be OK."  I love her for that.  I get so tired of hearing "I'm so sorry".  I hate feeling like others pity us because we don't pity our situation at all. In fact I didn't want to tell anyone at first because I didn't want to see the pity in their eyes.  I don't want them to become uncomfortable and not know what to say so they just don't talk to me anymore or go way.  We love our Sierra, we wouldn't change a thing.  Yes it's sad, yes I'm mad sometimes but not for myself.  I'm mad or sad because of what Sierra has to go through or what she misses out on but really in the end she comes out on top.  She will never be a dancer, a beauty queen, or a Val Victorian BUT she is so happy, so loving, and so beautiful.  She's already perfect and some day when this superficial world is gone her body will become perfect, just like her spirit.  She has changed me forever.  She has changed my whole family forever.  Who wouldn't want an Angel living with them??  Elder Holland once told some friends of ours that " 'these' children personally escorted Satan out of Heaven".  She must be pretty special.  I am so blessed.

Please Pray for Sierra and that her surgery will go well.  Pray so she can come home quickly.