LOOK WHO'S TWO--BELLA GRACE!!!!

Bebe and Bella checking out the cupcakes

Beautiful Birthday Girl!

We kept it simple but it was JUST right!

That smile never get old!!

Bella getting some love from Daddy!

Bella hanging with dad and Abby and Dallin

It's the Price clan!

Mom and Bella!

What? You want me to do what?

She liked unwrapping gifts this year.

Gifts that help me learn!!

It's the birthday cupcake.

If I look away I can pretend it's not there...right?

Epic gag on the frosting!  A BIG no thank you!!

But......I'll eat ice cream!!!!!!!

Bella is 2 tomorrow!!

I can't believe that in a few hours Bella will be 2!!  Can it really have been 2 years ago that our lives changed so dramatically?  I have had a rough month.  This birthday has been harder for me then her first.  On her first birthday, after you adjusted her age for prematurity and then considered all the surgeries she had gone through, she wasn't really that far behind on what you would expect her to be doing.  This year, however, we still aren't sitting, or talking, or eating, or....you get the idea.  Don't get me wrong she has accomplished so much this last year, it truly has been amazing.  BUT she is now over a year behind in most developmental milestone and that is hard.  It is agonizing to watch your child struggle everyday to do things that should be so easy (like catching or righting yourself when you start to tip over or holding your head up).  Being sad about this doesn't negate my gratefulness for everything she is doing.  Never at anytime will you hear me say I'm not grateful but it doesn't mean that my heart doesn't ache for all the obstacles she has.  I secretly in my heart hoped that by two she would have been one of those babies who beat the odds.  One who walked away from extreme prematurity with little if any lasting disabilities.  Reality and acceptance of where we are now comes slowly.  Sometimes I take one step forward and then 50 back in my coping ability.  Sometimes it seems surreal to think I am now doing the one thing I never imagined I would be strong enough to do. It is hard to not stress about where we will be in 5, 10, 20 years.  I have to keep reminding myself to live today and enjoy each moment, not only with her but with each of my children and my husband.  

Everyday this month I have found myself saying, "Two years ago I was..."  Constantly reliving the events and days prior to Bella's birth.  As a mother of a preemie I live daily with the guilt that my body failed her.  She was cruising right along and it was a problem on my side of things that triggered her immediate and frightening birth.  As I watch her work so hard in therapy the guilt, at times, becomes unbearable and I want to break down and cry.  Today has been especially hard because I keep thinking "what if".  What if I hadn't gotten out of bed so many times that day?  What if I had demanded the steroid shots earlier?  What if her birth hadn't been so emergent, would she have had such a massive brain bleed?  What if, what if, what if.  I know logically that I can't play that game but sometimes my heart just can't help it. 

So in an effort to find the right perspective I have been saying, "What if I hadn't already been in the hospital the night she was born?  What if my doctor hadn't come to the hospital to check on me and decided to stay a few hours to make sure everything was stable?"  I'll tell you where I would have been and that is not here raising 4 beautiful children and loving one amazing husband.  I'd be watching from heaven.  I think with time it has become clearer just how close both Bella and I came to not making it.  As I look back at the night she was born I can see God's hand so clearly.  He made sure everyone was where they needed to be at just the right time. 

Tomorrow will be a beautiful day!  Bella is my proof that God still sends miracles.  Because of her I have realized just how many miracles we have been given.  I look at my older children and see the amazing miracle that each of them are.  That I was able to carry 3 pregnancies to term and deliver 3 healthy babies is now miraculous to me.  How lucky I am to have all my children here with me!!

So as we count down the hours until December 11, I choose to celebrate!!  Celebrate the little girl who's laughter brightens the darkest of days.  The little girl who has taught me so much about my Savior and Gods loves for me.   The little girl who has strengthened me in so many ways. The angel that got to stay. 

We made it home from Salt Lake. It was a great visit. The neurosurgeon was very pleased with Bella's MRI. It looks as good as it can with half of her brain missing on the right side. Her ventricles are still large but that is because of the brain loss. Her ETV is working great. In fact the MRI showed it so clearly that he asked if he could use her scan for teaching purposes. He said that unless something unusual happens he doesn't need to see her for a whole year!!! The eye surgeon was also very happy with how Bella's eyes look. They are still positioned correctly and he lowered the prescription on her glasses. I'm glad it's done and we are home. I always prepare myself for the worst when seeing her MRI.  It never gets easier to see the giant black holes in her brain. BUT Matt and I were listing things she can do and here is what we came up with.
She knows and can point to:
hair
ears
eyes
nose
mouth
tongue (she sticks it out)
cheeks
chin
belly
tubie (yes we taught her she has a belly button and a tubie button and she can point to both)
toes
hands
finger
she knows where her diaper is.

She consistently uses sign language for:
yes
no
more
me
up (she invented her own sign for this but you know what she wants)
and we are working on please, thank you, all done

She rolls to get places now. She laughs, gets sad and cries (especially when I sing Twinkle Twinkle Little Star), and she gets angry (mad enough to bite her own hand).

She is close to sitting and loves to stand and walk with someone holding her.

She has come so far and we are so proud of her. We also want to thank Granny and Aunt Bebe for watching the olders kiddos. I also know that Bella benefits greatly from all the love and stimulation she gets from her brother and sister. And thanks to all of you, our family and friends for all your prayers, positive thoughts, and kind words!!! We feel so blessed!

All things Bella

Here it is almost October and I haven't kept up on the blog all that well.  Here is the run down of Bella the last few months.

I think the biggest news we have is....her weight.

Weight: 18lbs 8oz (up from 12lbs 11oz in May)
Height: 30 inches (up from 27 in May)

She actually has rolls.  I am SO excited!!!

One major bummer of the last few months is that Bella has decided that she won't eat by mouth anymore.  In a matter of a few weeks she went from 100% oral fed to 100% tube fed.  The doctors and therapist can't explain it, other then to say that she is acting age appropriate (in telling us she was tired of the bottle and the nasty formula).  This has been a huge disappointment for me.  Her eating orally has always been the one thing she did well, so for her to loose that was devastating to me.  However, her growing and getting the proper nutrition trumps those feelings.  She still has massive reflux and can vomit when the mood strikes her.  But it is way less than before so thank you nissen!

We go back to Salt Lake City in November for another MRI and a follow up with the neurosurgeon and eye surgeon. 

Bella refuses to wear her glasses and I haven't figured out a way to keep them on her so I pick my battles.  We see a specialist from Denver's Anchor Center every 3 months and I am encouraged with what she has to say.  We were told again today that Bella has enough functioning vision (without her glasses on) that they are confident she will be a visual learner!

We were able to cross one specialist off our list this week.  As of Thursday, Bella was released from the heart doctor.  Bella's heart is a picture of health!!  What great news!!!

I get the question a lot "Where is she cognitively?"  That is such a hard question to answer.  Because Bella is so involved physically it is hard to "test" her on things.  Who realized how much we use our body to demonstrate what we know mentally.  My answer to that question..... She is pretty delayed but making great progress!! 

We recently started speech therapy.  We were told that for speech Bella is at a 6-9 month level.  Not to shabby for a little girl with her history!!

Therapy is going well.  We have a Stander for Bella now in addition to her chair.  This helps her learn to bear weight on her legs and lets her view the world from a different perspective.  She rolls both ways now, which is exciting.  We are getting ready to Botox her legs soon.  Hopefully this will break up the spasticity in her legs enough to let her learn to sit and stand better.

Things she knows.  Bella knows where her hair, ears, nose, lips, tongue, belly, toes, and finger are.  She will show you these on command.  We actually taught her how to pick her nose.....don't judge.  It was the only way I could get her to show me where her nose was.  She is starting to learn her colors.  She can also take things out and put things in a bucket.  She plays patty cake and peek a boo.  If you cover a toy she will remove the cloth and play with the toy (this is huge).

She will growl at you when she is upset and sometimes will even bite herself.  She knows how to tell you no no no (and does this quite frequently at therapy).  We are working on sign language and the sign for "yes".  She is quite vocal some days (especially with her siblings).

I think that is it.  Bella in a nutshell. 

Bella update!

Here it is, August 1st and I have been terrible about keeping this updated.  I really do better with Facebook.  But here is Bella in a nutshell.

Weight:  Tuesday she weighed in at 16lbs 8oz.  Remember 3 months ago, prior to the gtube/nissen she was 12lbs 12oz.  So almost a 4lb weight gain in 3 months.  Not too bad!!

Height: She measures at 29 inches.  Prior to the gtube/nissen she was 27 inches.  So almost 4lbs weight gain and 2 inches.....again, not to shabby!!

Head:  We go back to have a sedated MRI in November of this year.  Her neurosurgeon thinks things look good (as good as things can look when half of your brain is missing).  He said he is pretty sure that Bella won't ever need a shunt.

GI:  This has been our toughest challenge the last few months.  Bella had a gtube/nissen surgery on May 7, 2013.  It took forever to heal and we had SO much trouble with granulation tissue.  She was in constant pain.  Finally we got the surgeon to agree that something wasn't right.  He took her back to do a scope and make sure that everything in her throat and tummy looked good.  While he was in there he cauterized all the granulation tissue and put in a new button.  Since then, her tube hasn't bothered her one bit!!  She is back to rolling over on her tummy and doesn't even seem to notice that the tube is there.  I wish I could say we have had all good news in the GI department BUT not so.  About 2 weeks ago Bella got sick.  She ran a fever for about 4 days and then developed a nasty cough.  During this time she took less and less volume by mouth, which means we were tubing more and more through the gtube.  Until one day she just refused the bottle all together.  So now we are battling to keep her orally eating while balancing using the tube so she can keep growing.  Thank goodness for a wonderful therapist!!!

Motor skills:  Bella is so close to sitting!!  She can roll over from her back to her tummy but then gets stuck.  Really, she is pretty far behind in the motor skills department.  She is still at a 3-4 month stage.  We have recently gotten her a chair that helps her sit.  She loves it because she can be more involved with what is going on around her.  At first I cried at the thought of her needing the chair because it is so medical and just one more reminder of how much she has to overcome.  With that said, I LOVE this chair!!  It gives her the independence she so clearly wants.  She is working hard in therapy and I think the next thing on the list to get is some braces for her legs and her left hand.  She will more then likely be getting some Botox soon too.

Cognitive skills:  Bella is one smart little cookie.  She know where her hair, ear, nose, tongue, lips, and belly are.  She gives kisses and will blow you a kiss too.  She waves bye-bye, and waves her finger at you to say no no.  She also plays patty cake.  She will play peek a boo and laughs at her older siblings all the time...yes, they are pretty funny.

I'm sure I am forgetting things but wanted to get this posted.  We always welcome prayers and positive thoughts.  Thank you for following our miracle!!

Bella loves listening to music!

Mama and Bella

Bella's new chair

Update plus post-op pics

Still trying to wake up completely from anesthesia but it's a battle anyway you look at it- when awake she's trying to whip off her IV & arm board keeping her arm straight. Or she's crying/moaning because she's hungry & cannot eat yet. Doctor says the tube will be clamped tomorrow in the early am, then residual in her belly will be checked after about 4 hours. Then if everything looks good she will get to eat. Please pray that is the course.
I've included some post op pics with this post. Thank you so much for the prayers & positive thoughts!

Surgery day-May 7th, 2013

Well, just a quick update- the OR nurse called out to say they expect Bella to be out in another 30-40 mins. She only went in about 10 minutes late. She started the day with eating about 2 1/2 ounces of Pedialyte at about 5 am, then got really mad in pre-op when she was placed on the cold, hard plastic scale for a weight check (12 lbs, 13 ozs), started urping which then hit her very sensitive gag reflex & then launched it up, of course! So, that tummy of hers better be empty!
I've included some pre-op happy pics so we can compare for after when she awakes grumpy from the anesthesia.

Nissen/G tube surgery

After much thought, many prayers and buckets of vomit, we have decided to have the g tube and nissen surgery for Bella.  We don't go into this lightly and have spend months going back and forth about what is best for her. 

Bella's reflux is so much worse.  She is miserable and we are miserable watching her reflux and puke so many times a day that we don't even keep track of it anymore. 

Our plan is to use the g tube only for "burping" Bella.  She likes to eat her bottle and if we never put one feeding through the tube, that's fine with me.  I also like knowing that if she gets sick or has a day when she isn't interested in eating we have a back up method.  I am more then ready to not have her vomit multiple times a day.  I look forward to taking the back out of the car that has 8 outfits for her, blankets, and a change of clothes for me. 

I hope this surgery will help up in someways reclaim our life.  I am so scared to take her anywhere for fear that she will get upset or gag and empty her stomach content in a less then desirable location. 

Her surgery is scheduled for next Tuesday, May 7.  We would appreciate your prayers.  And as always many thanks for all the love and support you give us!

Bella's tent

We set up a make-shift tent today to help with Bella's eye sensitivity to bright light. It was a bright & sunny morning today after a crisp cool rain last night.

Post surgery pics

Pics

Daddy keeping light outta Bella's eyes post dilation (prior to surgery)

Bella in carseat waiting in check-in

Bella & daddy enjoying a nice spring day (before all the snow fell)

Bella helping daddy in the garage last week.

Post Strabismus correction surgery April 17th, 2013

Well...once again it's been awhile since we posted on the blog and are trying to do better at this.

Today was Bella's eye muscle correction surgery...ya know the one where they straighten out her cross-eyes.

Just to get you caught up on most everything else first....

Neuro: still good, progressing with sounds and actually sees pretty well. No shunt. Soft spot is closing but still concave. Bella continues in therapy to improve her muscle tone, but is still not strong enough to sit up on her own yet. She can however, (& does this quite often), roll over to her belly in seconds flat after being placed on her back on the floor. She prefers to roll to her left to get to this position.

GI: The Neocate Jr with Prebiotics lasted roughly a month before she yep, you guessed it, started launching again. We have now started her on the Ellecare powder formula and so far has been less "urpy" but occasionally will still lauch up. If you tick her off, or if another child/baby is crying, Bella is an empathetic cry-er and so she starts crying, then urps, then gags, then lauches. She's still taking Prilosec, we have begun her on some Erthyromycin to assist with gastric motility, she still takes Miralax daily to help with BMs and she will get an occasional dose of Carafate to help coat her esophagus when the reflux is unbearable (mostly to us parents-seeing her urp and gasp is no fun). Oh, and her last weight check at the office netted 12 lbs 11 3/4 ozs. She is now up to a stunning 26 inches in length. Oh, and one more thing, the G-tube is back to a very serious consideration...but after witnessing what she experienced today...another surgery...another date with anesthesia...seems unbearable....

So back to the present day and time: Bella was a happy go lucky girl in the pre-op waiting area today, even did well when we handed her off like a football to the very wonderful Anesthesiologist (who commutes to Primary Childrens from Colorado Springs by the way). The surgery went "as well as it could have" per the Eye Surgeon and lasted roughly 1 hour. Becky got to go back to be with Bella during 1st stage recovery and I got to join them shortly thereafter (about 2 hrs after surgery start time) in stage 2 recovery which lasted well past 5:30pm (surgery started a little before 1pm) when the nurse came to us with an O2 tank- we placed Bella on a nasal cannula at 1/8 of a liter of O2 (up to that point she had been on blow by) and we prepared to take her back to the hotel room to stay in town for the night just in case. Well, we had been getting a little uneasy for a couple reasons: 1. Bella was not able to return to baseline O2 saturation levels w/o the oxygen (expected right? she has chronic lung disease), but she was not really waking up or opening her eyes (who'd blame her, they'd just had them propped open for an hour in the operating room doing a thorough exam and cutting into her eye muscles). So needless to say when the Resident and Anesthesiologist showed up talking about keeping Bella in an observation room, we were not at all surprised. Unhappy? Maybe a little, but Becky definitely felt more comfortable staying at the hospital so they could keep a closer watch on Bella. In the midst of all this recovery time, the nurse had reviewed discharge instructions with us and they all did an excellent job taking care of all 3 of us. So, here it is after midnight: Becky is sleeping in a hospital bed next to Bella, who continues on 1/8 liter of O2, still will not open her eyes, and she is not eating as good as you think a starving, hungry little girl would....but COMMON! This is Bella we're talking about! She doesn't follow the rules, she doesn't do it the textbook way, or even the normal way. She's a premie, still struggling to break free from the textbook premie problems. Patience? You betcha!
The frustrating part (and I was able to vent this to Becky before I returned to the hotel room) is that the eye doc spoke as if this surgery is "no big deal" in the pain department. I beg to differ and told Becky, maybe he should come take care of a child post-op over night to actually experience caring for that child as he/she wakes up from Anesthesia and will not open his/her eyes due to the sensitivity to light or blood shot/ blood stained eyes. Then, maybe he could relay a bit more information pre-op to prepare the parents, no matter what profession they are, allbeit they be health care professionals....

WOW! Ok, I said it....or wrote it. Now, I pray forgiveness for my unorthodox thoughts, but more importantly....pray for Bella that she has a restful night, recovers completely from the after effects of the anesthesia to her body, and Becky, her, and I tolerate the long 5 hour trip (with multiple stops) back to Grand Junction tomorrow (which as you may know got over 3 inches of snow on Wednesday-likely and hopefully it will be all melted before we return).

Right now- I want to give a shout out to my mother in law Suzie Q and sis-n-law Beebs for doing outstanding work with our other 3 children- Ally, Abby, & Dallin, while we are over here in Salt Lake City. I want to give my father Brent a big thanks for helping me give Bella a blessing on Tuesday night. I also want to say thank you to my staff (including Monica) back in the Community Hospital ICU & entire hospital staff for the positive thoughts and prayers for Bella and our family.

We don't have any post-op pics, but I do have a few recent pics to add to this blog.

I really am trying my best to take lemons and make lemonade, so please continue sending the positive vibes my way!
-Matt-

MIA

So, we have been MIA for a few months.  My heart had many moments that it wanted to update the blog but I just never seemed to make it to the computer.  Life has been crazy.  Here is a quick run down on all things Bella.

Current weight 12lbs 6oz (she gained 1 lb in 10 days)
length is 25.5 inches

Neuro:  Bella is still shunt free.  Our next appointment in Salt Lake is in July.  I don't worry so much about the hydrocephalus anymore.  We had a couple appointments with the neurologist and while she was a very nice person and oohhed and awed over Bella, I have no desire to see her again.  Why, you might ask?  Because she got to be the bearer of difficult news.  Because of the bleed Bella had in her brain at birth, she is now missing about 1/2 of her total brain volume.  This sweet doctor gave us this news as well as the diagnosis that Bella has moderate spastic quad CP.  Is it becoming clearer why I might want to avoid seeing her again?  As long as Bella remains seizure free (she is at high risk for seizures) we will only have to see Dr. Green once a year.

Eyes: Bella will be having her first eye surgery in April.  This surgery is to align her eyes, which will hopefully help her eyes and brain work better together.  We have seen some improvement in her CVI which is reassuring.

GI: Poor Bella has been through the ringer with getting the right food for her to grow on.  Bella was labeled failure to thrive and we had actually scheduled surgery to place a g-tube.  We tried her on Pediasure which was a big no go.  Then switched to Pediasure Peptide (protein is more broken down) this lasted about 1 month before she was throwing up all the time.  It is my diagnosis that she does in fact have a milk protein allergy.  She is now on her 3rd week of Neocate Jr. she seems to be handling it well (hence the 1 lb gain in 10 days).  The g-tube as been postponed until we re-evaluate in May.  Prayers are that she will keep eating the Neocate and grow, grow, grow.

Therapy: We love our Missy!!!  Bella now goes to therapy 3 times a week.  Twice for PT/OT and once for feeding therapy (trying to get her eating solids).  Progress seems very slow to me.  It seems like we make a good stride and then Bella gets sick and we start over.  She still isn't sitting on her own.  She can roll back to belly but then is stuck there until a) someone takes pity on her and rolls her over or b) she goes to sleep.  She still doesn't push up on her arms when she is on her tummy.  BUT her legs are not as tight.  She is sitting supported better and her head control is coming along.  PATIENCE is SO hard!!! 

We are gearing up for the March of Dimes walk.  We are also working on the "Because of Bella" project.  My goal is to update at least here monthly.

How you can help.
We always appreciate prayers.  Specifically that eye surgery will go well, that Bella can continue to eat well and grow (hopefully without a g-tube), and that she will respond well to therapy.

As always, thank you!!!

Neuro and Eye appt news

We had a recent scare with Bella and her head.  She had been vomiting more and was irritable and didn't seem like Bella, so I sent an email to her neurosurgeon in Salt Lake.  This was done, intending to update him on all things Bella....I didn't expect an immediate response telling me that he was moving our appointment up from the 21st to the 9th.  So we made a rushed trip expecting Bella to need surgery on her head.  She had an MRI prior to seeing her surgeon and we got good news.  The following is what I posted on Facebook.  So now we can be all caught up.... :)

Prayers have been answered! Bella Grace will not be having surgery tomorrow! Her ventricles are still very large but the neurosurgeon said there is no intercranial pressure and putting a shunt in wasn't going to change anything crucial to Bella's development. Her ETV is still working and the MRI showed good movement through the ventricles. His exact words were, "I'm tempted to say that no shunt will be necessary". He felt so encouraged that we don't come back for 6 months. So now I just need to get the picture of her brain out of my head (trust me it is frightening to see that your child, in essence, is missing half her brain), and focus on Bella and how to help her be what God intended for her. On a side note, he did encourage a g-tube so we can maximize Bella's brain growth. So that is our next big question and what we will be praying about. Thank you all for your love, support, and prayers for our little miracle! We are so blessed!

Another Bella update. We saw her eye doctor this morning. He said her optic nerves weren't swollen, which is good. That mean her large ventricles aren't putting pressure on her optic nerves. He did say the time has come to do surgery to straighten her eyes. He hopes by doing this it will help Bella's brain and eyes work better together. He said it would probably take 2 surgeries to keep the eyes where they are supposed to be. So, surgery #1 is scheduled for March 22. Bella seems to be recovered from the anesthesia from yesterday and we are on our way home. I can't wait to see my other kiddos!

And one more update....
We will be headed to Denver on the 21st to meet with a GI specialist.  We need to figure out why Bella isn't eating as well as she should be and why she isn't gaining weight good.  

 

2013 Goals

Bella Grace has some goals of 2013.  She may not know it, but she does....her mama says so!!

Goals:
1. chubby up (preferably without needing a gtube).
2. Not need any more surgeries on her head (or anywhere else for that matter).
3. to sit up by herself (and any other milestones she wants to throw in there...the more the merrier in this mama's book).
4. to start making noise (I know I pray for a noisy kid.....)
5. teach mama patience.
6. teach mama to enjoy the moment.

Ways you can pray for our sweet Bella Grace:

1. For her head to continue to heal and that she won't need any more surgeries.
2. That she will be able to eat better and gain some good weight.  Especially as we are trying to transition her from breast milk to Pediasure.
3. That she will respond well to her therapies.
4. That her eyes will continue to improve.
5. That we as a family will have the patience we need to allow things to happen in the Lord's time.  We don't wait well sometimes.

As always, thank you for your prayers and support!  We love you all!!

Reflections

2013....When did that happen?  I swear we were just sitting in the NICU with Bella wondering what the future would have in store for us.  Well, now here we are over a year later, and guess what, I am still pondering that same question.  What does the future have in store for us as a family and for our Bella Grace? 

2012 has been a year of joyous moments and minutes of sheer agony.  We have watched our daughter struggle to do the simplest of things.  We have had to make hard surgical decisions regarding Bella, more then once.  We got real acquainted with medical terms like: ETV, septostomy, choroid plexus coagulation, spastic quadripalegic cerebral palsy, cortical vision impairment, RSV, Synagis, developmentally delayed, feeding difficulties. IVH, brain loss, PVL, CLD......the list could go on and on.  We have had to try and start to come to terms with what it means to be a parent to a special needs child. 

BUT, we have watched that little 1 lb 9 oz miracle defy so many odds.  We watched her struggle to get of the ventilator and learn to eat so she could come home from the NICU, and although it was tough, she did it!  We have seen her go through multiple head surgeries and come out smiling, teaching us what true strength looks like.  We have watched her grow, and wean down on needing supplemental o2.  She has made huge improvements with therapy.  She has taught us how to enjoy each little accomplishment.  Bella has a smile that will warm your heart no matter how bad life may seem.  And even though we are struggling to get her to eat and gain weight, she is eating!  Something they said she would never do.  We have watched as one doctor after another looked at Bella in awe.  They are amazed at how well she looks and the things she is doing.  This is huge considering what her medical chart looks like.....not to mention how scary the images of her brain look. 

I'll be very honest, I have bad days.  Days that I wonder how I'll ever get through another minute or one more piece of bad news.  Weight checks that show she has lost more weight.  Head ultrasounds that show enlarged ventricles.  Days that I wonder why she has to struggle with every little thing.  Times that I fall down in a heap of tears and plead with God to heal her.  Nights when I sob about the "unfairness" of it all.  Moments when I beg to take away some of the challenges that she faces.  Days when I can't get past the phrase, "Why her"? 

But through it all, God is right there.  Sometimes He sends those moments of quiet peace.   Often He shows his love through others, who reach out exactly when I need them.  Sometimes, He doesn't say anything, letting me cry, beg, plead, rage and then He reaches out and whispers that it will all work out in His time.  Even when I push Him away, He lets me know that He is never going to really leave me.  I can't even begin to describe the love I have for my Father in Heaven and His son, Jesus Christ.  Because Christ died for us, I know that Bella can be healed.  Maybe not how and when I want, but one day all things will be made right.   While this knowledge doesn't make it easy to deal with fighting to get Bella to eat and gain weight and it doesn't make my anxiety of her upcoming trip to Salt Lake go away, it does give me the courage and strength to take another breathe and continue on. And for now, right here in this minute, that is enough.