Miracle Baby

Hard Knocks and Hope

2011-08-12T16:31:00.001-05:00

The past few weeks have been really rough! We've had a series of hard knocks. First, we had a plumbing bill to the tune of $1800. The following week, we had to put Shylah, our German Shepherd down. (That whole episode was very tragic and stressful situation.) We put her down on a Monday, that Friday I had a miscarriage. I was 8.5 weeks pregnant when I lost the baby. Right after that, our family all came down with the flu. It was the worst sickness we've had in a long time. While I was sick, I destroyed my phone by putting it in the washer. So yeah, the past few weeks have been rough.

Nonetheless, God is faithful. He is our hope and help in trouble. When you get knocked down so low, there is only one way that you can look and that is up. Sometimes that is what it takes to get us hard headed, independent people to turn our focus back to God. I have to admit that I did go through a "woe is me" stage but now I'm trying to get back up and focus on seeking God's will.

September and October are going to be very difficult months for us emotionally. September 19 was Sierra's birthday and October 17 is when she entered the gates of heaven. A friend and I are working on putting together something special to do on Sierra's birthday. More details will follow....

What's up now?

2011-06-28T12:39:00.000-05:00

Despite the pain, life has been very busy. Buck is now a certified therapy dog. Now we just have to find a place to visit! Our goal is to visit children in the hospital, but we won't be able to do that until after the children's hospital moves in October. We would also love to visit children in a special needs class, but it is summer vacation right now. We are trying to find a nursing home to visit until we can do either of those.

Also, I'm not sure how feasible this is, but I would LOVE to train service dogs for special needs children. I'm going to be doing research and trying to find out how to go about that.

Ruby is growing like a weed and getting into tons of mischief. She brightens our days and keeps life interesting.

Hello Blog

2011-06-28T12:35:00.000-05:00

I know that I've neglected this blog lately. It's not because we are doing great and completely healed. The pain is still so real. The past week was particularly difficult. I'm not sure why. We miss Sierra so much. Ruby has been talking a lot about "Sissy" lately. She's been saying, "Sissy? Bye." and "Sissy? Know?" as she's saying it, she'll hold out her little hands like she does when she's looking for something. Another thing she said was, "Sissy, I lo lu" (I love you.) It is sweet and heartbreaking all in one.

Independence Day is coming up next week. It was always one of my favorite holidays. This year I'm dreading it. I don't have my precious angel baby to dress up in red, white, and blue. Sometimes, I wish we could just skip holidays. Sometimes I wonder how it is possible to celebrate when we are in so much pain. Yet life must go on. Not for our sake, but for Ruby's. We want her to experience all the joys of childhood.

I think sometimes people see us out and about and think that we've healed and are no longer suffering. What they don't see are...

....the tears shed in the quiet of night
....the pain of seeing the matching dresses that Sierra and Ruby were supposed to wear the day Sierra went to heaven.
....the shattered dreams of having Sierra get a wish granted from "Make a Wish"
....the daily items that were Sierra's that she will never use again
....the "we should have..." thoughts
....the little girl who will never see her "Sissy" again on this earth
....the pain of seeing other special needs children and knowing that I can't hug my own special needs child

The list goes on and on just as does the pain.

Forever In Our Hearts

2010-11-10T23:10:00.000-06:00

Forever In Our Hearts
Author: Unknown

God looked around His garden
And He found an empty place.
He then looked down upon
This earth and saw your tired face.
He put His arms around you
And lifted you to rest.
God's garden must be beautiful,
He always takes the best.
He knew that you were in pain.
He knew that you would never
Get well on earth again.
So He closed your weary eyelids
And whispered, "Peace Be Thine."
He then took you up to Heaven with
Hands gentle and so kind.
It broke our hearts to lose you,
But you did not go alone.
For part of us went with you
The day God called you Home.

Finding A New "Normal"

2010-11-08T13:25:00.002-06:00

Today Jason went back to work. It's been 3 weeks since our little angel baby left us. Now we are forced to return to the routines of life as we try to find a new "normal." That is easier said than done when it feels like our hearts and lives have been torn apart. Life will never be the same again, but through God's grace, we will persevere.

As we were sitting in the FL airport crying our eyes out as we waited for our flight home, a lady came over and tried to offer some words of comfort. She had lost her adult daughter 2 years earlier. She said, "When I get up in the morning, I say, 'I'm just going to do the best I can today.'" That's how it is with us right now. We are living one day at a time. I think of the hymn Great is Thy Faithfulness that says, "...strength for today and bright hope for tomorrow..." We haven't reached the "bright hope for tomorrow" stage yet but I know it will come. God is truly faithful.

I never really realized how much time I spent with Sierra. Yet, despite the many hours we spent caring for Sierra and her special needs, she was NEVER a burden to us. Caring for her was pure joy, and we got so much back in return. There was not one single time when we got frustrated or impatient with her. How many 3 year olds can you say that about? (I can't say the same for Ruby and she is only 10 months old!) She was truly a remarkable little girl. In the coming days, I'm going to dedicate a post to writing about all the lives she touched.

One of the things that I want to do with some of my free time is to begin training Buck to be a pet therapy dog so that we can visit children in the hospital. Last week, we had a consultation with a dog trainer and we put a down payment on a training package. Hopefully Buck and I can begin that in the next month or two. I know I've mentioned doing this, and now I want to give a little explanation as to why I want to do this.

Buck and Sierra loved each other. Buck was so good with her. He loved cuddling up to her and was so gentle. A few days after we arrived home (without Sierra), Buck started sniffing around Sierra's playmat. Then he went running around the house frantically looking for her. He seemed to realize that she was gone and became very sad. It will be wonderful when he can make other children happy and show the same love towards them that he did towards Sierra.

Another reason we want to do this is because the community did SO MUCH for us when we were doing fundraising for Sierra. We feel that this is a small way that we can give back to the community. Sort of a "thank-you" for all the help they gave us.

In a way, I think it will be part of the healing process for me. I never would have thought that I would want to go back into the hospital with all the memories that we have of hospitals. I feel like this is something that I can do for God and for Sierra. I know how scary it can be to have a child in the hospital and how touching it is when someone does something nice for your child. If Buck can make a few children happy then it will be worth it. Maybe God will allow me to bring a bit of comfort to the parents as well. I'll be sure to keep everyone updated on our progress with the dog training.

Sunshine in the Rain

2010-10-31T21:50:00.006-05:00

Through this horrible storm, we have seen bursts of sunshine as God orchestras all the details and reminds us of His loving care. My mother asked for me to write them out because she wanted to send an email about it. I think I'm going to just list them out in bullet form.

*The ER that we took Sierra to was very good. All of the people were VERY nice and showed lots of compassion. They were caressing Sierra as they worked on her. It was a much different ER experience than we've ever had before.

*The people in the ER also allowed us to have Ruby in the room with Sierra. We only had her in there with us for a few minutes and then passed her off to her grandparents who were in the waiting room. But it was special that we had a few last minutes together as a family.

*Sierra went to be with Jesus while we were vacationing in Florida. She passed away on a Sunday morning. We were supposed to come home on Tuesday. After she left us, we felt an urgency to get home ASAP. Jason called up Jet Blue and asked if there was any way they could change our tickets. They were AMAZING! They were on the phone with Jason for an hour and the lady worked really hard. She was able to get us a nonstop flight coming home that afternoon. On top of that, she waived $1500 worth of fees.

*Since everything happened in FL, that meant that we had funeral home fees for the funeral home there, plus transportation, plus the funeral home here. We didn't have life insurance on Sierra. Some friends very kindly offered to transport her body for us to cut down on expenses. We decided it was probably best just to have the funeral homes make arrangements to fly her body back. We used a funeral home in FL that is owned by someone Jason's uncle knows. He gave us a discount. Some friends called us and said they wanted to help out. They generously paid for the expenses of the funeral home in FL as well as the transportation costs.

*Three groups of people have taken up a collection for us (church, work, online friends) and many people have sent gifts. The money will be used to pay for the headstone, get Sierra's name engraved on the memorial wall at Morgan's Wonderland, and make a memorial garden for Sierra at our land.

*Jason's parents (who were also vacationing in FL at the time) were flying in for the funeral. They were flying into Dallas. We had so much going on that it would have been difficult for us to pick them up. Jason called up a friend and asked him to pick them up. That friend was already planning on driving from Dallas to Temple that day.

*We decided to sell the hyperbaric chamber to help pay for the funeral expenses. I posted a Facebook status about it. Several of my friends reposted my status to try to help us. Within several hours, someone had bought it.

*Some dear friends put together a book with pictures of Sierra and many sweet notes. It is so beautiful!

*When we were making funeral arrangements, we stopped by a cemetery that someone said used to have free plots for children. It turned out that they no longer had free plots for children. The man there was very flippant and we didn't like him. We weren't thinking clearly at the time and probably would have went ahead with that cemetery if our pastor had not been with us. He said, "This doesn't feel right. Why don't you keep looking?" So we went home. We started talking about it and decided that we really wanted to find a little cemetery out in the country.

We had recently purchased land just outside of Troy. Our plans were to build there and get Sierra out to the country. We did a quick Google search for cemeteries in Troy. There were three listed. None of them had contact information. The funeral home didn't have any information either. Jason and our pastor began making calls to try to find contact information. About three different people gave them the name of a lady who runs the newspaper in Troy. We tried calling her, but her phone went to fax. We decided to stop by. We were greeted by a very nice lady who seemed to know everyone. (The town has a population of 1,600.) She had the contact information we needed.

Out of the three cemeteries, the one that stood out to us in name was Shiloh Cemetery. One of them was right by the highway and the other one didn't really interest us. We drove out to Shiloh Cemetery and it was just perfect. It was only about 5 miles from our land. It was a peaceful little cemetery out in the country. The last person buried there was 26 years ago.

We called the lady in charge of the cemetery. She said that we could pick out any spot we liked. There was no charge, but we could make a donation if we wanted (which we will be doing.) Oh and Shiloh means, "Gift from God," which describes Sierra perfectly.

*It was cold and rainy on the morning of the burial. The sky was overcast and dreary. We arrived at the cemetery early and were wondering if the light rain was going to turn into a downpour. Once the service began, the rain stopped. Not only did the rain stop, but about 3 times during the service, the sun broke through the clouds. It was such a beautiful sight! I liked to think of it as Sierra smiling down on us.

Two Weeks

2010-10-30T18:35:00.002-05:00

Tomorrow it will be two weeks since our little angel left us. Oh how my heart aches. I miss her so much. :'-( Our family is incomplete without her. My days feel empty. Yes, I have a lot more free time now, but I would give up all of my free time to have her back in my arms.

Every little thing reminds me of my sweet little girl. As I walk down the baby isle to pick up diapers for Ruby, my mind says, "Do I need diapers for Sierra?" "Am I almost out of suppositories for Sierra or do I need to buy more." "I wonder if Sierra could drink out of that sippy cup." "There are some cute bows that would look good in Sierra's hair." On and on it goes. Then reality comes crashing down.

Modeling Mothering

2010-10-30T09:36:00.000-05:00

Rosetta does most of the writing here, but I wanted to jump in to talk about mothering.

Rosetta had modeled mothering for the last several years. Of Sierra's 3 years and 28 days of life, Rosetta spent 3 years and 27 days with her. The one day she didn't, our other daughter Ruby was born so she was a little busy. But its not so much about the number of days spent, its about what she did during those days.

When Sierra was in NICU, the doctors put a feeding tube in her stomach because they said she would never be able to eat normally. Rosetta found a special kind of bottle called a Haberman that assisted kids with with sucking reflexes to learn to suck. Within two months, the tube was out.

This does not mean that feeding Sierra was easy. She eventually learned to suck well enough to go to a regular baby bottle and then to a sippy cup, but feedings typically took at least half an hour, many times longer. On top of that, Sierra typically couldn't go to the bathroom on her own, so Rosetta spent significant time each day helping her make this happen.

On top of all that, there were endless therapies and appointments. It started out with taking her to a chiropractor in Austin twice a week. Eventually we switched to a chiropractor in Temple, but then found a good massage therapist in Austin that she started taking her to. This involved significant drive time, not to mention the various local therapies that she took her to, or had therapists come to the house for. Most of the time any time Rosetta got to herself was after midnight, if she got it at all!

Sierra's cues were very subtle. Many times I wouldn't even pick up on them. But Rosetta did, even if it was the middle of the night and she was asleep. Rosetta was so tuned in that if anything was amiss she would wake right up and tend to Sierra.

Sierra could not have had a more caring mother who dedicated her life to her daughter and giving her every opportunity.

Continuing Her Legacy

2010-10-27T21:28:00.002-05:00

I have decided to continue this blog. I will use it to write down memories of Sierra or share my grief as I miss my precious little girl. The entries will be very raw and real. Some of them will be happy memories and others will be filled with the pain and hurt of losing my baby.

If my SN friends do not want to continue reading my blog I completely understand! I know that when Sierra was still here it was very difficult for me to read about SN children that had passed away. During that time, I wanted to focus on her life and not think about the possibility of her leaving. Now that she is gone, I still want to primarily focus on her life.

Sierra Rose Fedelem September 19, 2007 - October 17, 2010

2010-10-18T21:55:00.000-05:00

Sierra Rose Fedelem

September 19, 2007 - October 17, 2010

Sierra Rose Fedelem was our precious daughter. She was not breathing at birth, almost died, and sustained significant brain damage which the doctors stated would prevent her from ever walking, talking or seeing. We chose to not give up and tried many mainstream and alternative therapies. She took us places we never would have gone and taught us things we never would have known. We are grateful for the time we had with her. She went to be with Jesus suddenly on October 17, 2010.

Everyone is welcome to attend:

Graveside service: Saturday at 11 am, Shiloh Cemetery, Troy, TX (Google Map: http://bit.ly/bjzVH7 )

Memorial Service: Sunday at 4 pm, Grace Community Church, Waco, TX (Google Map: http://bit.ly/9wHIVG )

She flew up to Heaven on the wings of angels

By the clouds and stars and passed where no one sees

And she walks with Jesus and her loved ones waiting

And I know she's smiling saying

Don't worry 'bout me

Alan Jackson, Sissy's Song

Our Precious Little Angel is with Jesus

2010-10-18T21:54:00.000-05:00

Sierra has gone to be with Jesus. Many people have been asking what happened.

Sierra had been kinda sick for a week or two. She wasn't too bad so I didn't take her to the doctor. We went to Florida for a week to visit Jason's grandmother (his parents were also visiting.) On Friday night her breathing was a bit labored and she was swollen. Her breathing improved by Sat morning. Sat evening her breathing became labored again. I woke Jason up around 4am on Sunday morning and told him we should take her to the hospital.

We looked up a Children's hospital on google and went to it. The people in ER were extremely nice. They even let Ruby in the room which was special because we got to be together as a family for the last time. They told us that her sodium levels, plateletes, and a bunch of other things were low. They said they would have to intubate her.

I had to leave the room during intubation. While they were doing it, I saw the nurses start to hurry around. A nurse came out to get some dopamine. I knew that wasn't good. I looked in the window and saw them doing chest compressions on her. I hugged Jason tight and started wailing hysterically. All of a sudden God enveloped me in a blanket of peace. I stopped crying and looked at Jason and said, "She's with Jesus now! She can walk, and talk, and see!" A few minutes later a nurse came out to tell us what we already knew.

It was a huge shock. We always knew that it would happen as some time, but she left at a time when we weren't expecting it. Overall though, we are grateful that God took her home so quickly rather than allowing her to be in the hospital for days on end.

JetBlue worked hard and got us on flights home that afternoon. Today we worked on getting arrangements made for transporting her body back to Texas, finding a cemetery, making memorial service arrangements, etc.

The graveside service will be on Saturday October 23, 2010 at 11:00am at Shiloh Cemetery in Troy. (From IH-35, take the 308 exit and go east for approximately 1.1 mile, turn left onto Shiloh Rd, go 1 mile and the cemetery is on the left.)

The memorial service will be on Sunday October 24, 2010 at 4:00pm at Grace Community Church in Waco, TX

Many people have been asking for our address. It is:

410 E Lamar Ave

Temple, TX 76501

Doing well

2010-08-23T01:16:00.004-05:00

Since I'm sitting here at the computer in the peace and quiet (the rest of the family is asleep), I decided it would be a good time to write a quick update.

Sierra has been doing really well lately. She has been so much more awake and alert. Since going to China for the stem cell treatments, we've really noticed cognitive improvements in her.

She is currently getting occupational therapy and speech therapy twice a week. They come to our home so we are not battling the germs at a therapy place. We goes the the chiropractor every other week and we have recently begun taking her to a "manual therapist" in Austin every other week.

The "manual therapist" has been helping her immensely! We were really starting to get worried about how curved her spine is. He is helping straighten it out. He does what almost looks like a massage but he says that it isn't massage because it goes deeper than tissue and manipulates the muscles and bones. To be honest, I'm not quite sure what he does (this man is so intelligent that I don't understand the majority of what he says.) But, whatever it is, it is helping! Her spine is getting much straighter and she has been more active.

Ruby is our little Energizer Bunny. She is so active and noisy. She loves Sierra and provides a lot of positive stimulation. I think having a sister has been one of the very best therapies for Sierra.

In other news, we are working on moving to the country! We purchased some land and after we sell the house, we plan to build a little at a time. I can't wait to get the girls (especially Sierra) out to the fresh air and do things like horseback riding more often. We probably won't move for a year or two just yet, but we are so excited!

Long Time No See!

2010-05-20T01:11:00.006-05:00

Wow, it has been forever since I posted here. I can't write a long post right now since it is 1 am. =) We use Facebook more than the blog nowadays.

The winter was really long and hard for us. Sierra was sick for nearly 6 months straight. She is feeling MUCH better now!

Sierra's little sister was born three weeks early. I was induced on Dec. 23 and she was born on Christmas Eve. Her name is Ruby Violet Faith. She is a great addition to the family and has provided lots of beneficial stimulation for Sierra.

Here are some pictures of the girls.

New Sister!

2009-12-22T21:21:00.004-06:00

It's been a while since I've updated and a lot has happened since then. In November, Sierra landed in the hospital with pneumonia and a staph infection. She was only there for 5 days and we didn't have to go to PICU. She was able to get out a few days before Thanksgiving.

This past Sunday Sierra started looking a little sick. On Monday, we took her to the doctor. He gave her a shot of Rocephin and started her on antibiotics. Today she is doing MUCH better. She is perkier and more alert. We are so grateful because tomorrow I am going to be induced, and did not know how I was going to survive if my other little girl was in the hospital.

Sierra's little sister is due Jan 15. Last week at a check-up and ultrasound they said that the amniotic fluids were low and put me on bedrest. On Monday they checked them again and said they were still at a 6. Tomorrow I go in for another ultrasound and will more than likely be induced. She will probably be born on December 24.

We would greatly appreciate everyones prayers. Please pray that Sierra would continue to improve, that God will give me strength, and that I would not have flashbacks of Sierra's birth.

P.S. I know something is wrong with the blog right now and won't allow comments to be posted. I'll try to get Jason to fix that sometime. Not sure when that will be. EDIT: Comments should now be fixed. If anyone is having issues please let us know. Most of you have alternate contact info for us. Pop up blockers need to allow popups on this site as this was the only fix I had for now.

More Progress

2009-10-17T11:27:00.002-05:00

I'm not sure if anyone reads this blog anymore but I figured it would be good for me to update for my own benefit. It seems like sometimes progress kind of sneaks up in little areas and they can be so small that you don't realize they are there until you look to the past and realize, "Hey, she didn't used to do that!"

Lately during feedings, Sierra has put her hand up a couple of times and placed it on the bottle. She'll leave it there for a few seconds at a time. In the past, if she would ever touch the bottle it would be with her fist closed. Now she is placing her hand on the bottle with her fingers open! So I decided that maybe it is time to see if she can gradually make the transition to a sippy cup. I bought her a sippy cup that has handles on it. The plan is to eventually get her to hold on to those handles. I had to remove the valve inside that prevents the sippy cup from spilling because her suck is still too weak to get anything out with that valve on. The few times that I have given it to her, she has done pretty well. I think she is rather annoyed that it isn't the bottle, but she has been able to drink out of it. One of the times, I took the lid off for the last few sips and gave it to her that way, like a regular cup. It was a bit messy, but she did fine with it! I would tell her, "Okay here is comes, now swallow it." That would give her an idea of where the liquid was. About 6 or 7 months ago, I had tried doing this and it resulted in the drink going down the wrong way and her having a choking fit. I didn't repeat it because I was afraid of her aspirating. She has had stem cell treatments since then, and I honestly believe that they are what have helped her gain more oral motor control.

I have been very pleased with Sierra's new therapists! They have been doing a lot with her and giving me ideas of what things to do at home. Here are some of the main things we are working on:

1. Stretches: Her arms. Her arms do not straighten out all the way. We are working on stretching them so hopefully the muscles will stretch and give her better range. Her thumbs. Her thumbs are a bit tight. Not too bad, but we are working on making them better. Her ankles. Same thing, just trying to make sure they don't tighten up. Her side. She has a tendency to pull to the left. This is causing her back to curve. We stretch out her left side and curve her to the right.

2. Sitting: We've been working on having her side sit with her arms in front of her supporting her and her fingers flat on the floor rather than in a fist. She did an EXCELLENT job on Friday!

3. Crawl position: Having her on all fours with her knees under her, her hands supporting her, her fingers flat on the floor, and her head up.

4. Rolling: She does a bit of rolling on her own but she will only roll towards her left. They are working on getting her to roll both ways. Last Friday, they put her on a swing. It is basically a square board suspended from the ceiling. They had her laying on it. A therapist was on each side. They would tilt the swing and have gravity help Sierra roll. She did really well on that!

5. Mouth exercises: They have been showing me some exercises to do with Sierra that are supposed to strengthen the muscles in the mouth.

Sierra gets therapy on Tuesdays and Fridays. On Tuesdays she gets half an hour of PT, half an hour of OT, and half an hour of ST. She was supposed to have the same schedule on Fridays but the OT and PT decided that instead they would rather work together and give Sierra a more rigourous 30 minute session instead of doing them seperately. It has seemed to work out really well. Sierra did such a good job with the two therapists. They made her work hard!

Pigtails and Poodle

2009-08-26T17:47:00.002-05:00

Rolling, Rolling Rolling & First Speech Therapy

2009-08-25T17:44:00.002-05:00

Rolling, Rolling Rolling

Sierra has been making so many little improvements in the past couple of weeks! Now she regularly rolls from her right side, onto her back, and then onto her left side. She doesn't like being on her right side so whenever I lay her down on her side, I put her on her right side. =) She almost immediately rolls. This morning, she rolled from her belly onto her side, onto her back, and then onto her other side. She was just about to make it back onto her belly but I had to interrupt her because we had to leave for her speech therapy.

Speech Therapy

Today Sierra had her very first speech therapy session. It is really more about learning to communicate and do things than it is about talking. The therapist had a toy that makes noise when you touch different buttons on it. She would put Sierra's hands on it and help her touch the buttons. We put Sierra on her right side (the side she doesn't like) and had her play with the toy while on that side. I believe that she was responding to the toy, because she did not even try to roll during the whole therapy session even though she hates being on that side!

Sierra's birthday is next month and I am really wanting to get her some toys that make noise, play music, or have varying textures for her to touch.

Thank you all for your continued prayers. God is continuing to work in the life of this miracle baby!

Sick, More Progress, and Therapy

2009-08-13T16:55:00.005-05:00

Sick

On Monday Sierra got a cold. She has been pretty congested. When I first saw that she was getting sick, I began giving her Berry Well which is a syrup with elderberries, Bee propolis, Echinacea root extract, raw honey, and raw apple cider vinegar. I was giving that to her about every 3 hours or so and giving her garlic "tea." The garlic did wonders in helping break up the congestion and the Berry Well helped boost her immune system. Of course all the prayers helped as well! She is doing MUCH better today and I believe she is on the mend. Yay! We didn't have to go to the doctor or give her any medicine.

More Progress

Over the past three weeks or so, we have been seeing a lot more progress! They are all very little improvements but they are improvements nonetheless. Let me see if I can remember them all. She has started using both legs equally. Before, when she was on her belly, she would pull her right leg up under her and push with it, but would hardly ever do that with her left leg. She has begun using her left leg almost as often as her right leg.

Sierra is continuing to do well with her weight bearing. She will stand for several minutes at a time when we hold her up. At church, I lean her against the pew and she can stand without me supporting her.

Her big toes always used to be scrunched up. About two weeks ago we noticed that they weren't scrunched up anymore. They were fully extended! I'm not sure the significance of that...I think it may have to do with her muscles loosening up, I don't know.

We've started noticing some more purposeful movements. Sierra has begun to put her hand up to her mouth. The other day, I put a toy in her hand and then helped guide it to her mouth. After that, she put it in her mouth, by herself about 3 times! It could have been an accident, but I don't think so. She has also shown more interest in touching toys.

Sierra's grandfather made a 12' crawling slide for her. The angle is adjustable. It encourages her to crawl and gravity helps her make progress. She is getting very good at crawling down her slide!

Perhaps the most exciting thing is that we discovered that she is beginning to understand some words! My mother pointed out that when we say, "eat" Sierra will start moving her mouth like she wants to eat. We tried saying "eat" at different times and she would respond by moving her mouth. Since she understands "eat" who knows how many other words she understands! She just has not yet learned how to show that she understands them.

Therapy

There is a new therapy place that opened here in Temple. We have been to evaluations for speech therapy, and occupational therapy. She will get an evaluation for physical therapy on Monday. We were VERY pleased with the therapists! They were excellent! This therapy place is called Hope Therapy Center. There have a branch in Waco and just opened this branch in Temple. They are eventually going to get aqua therapy and hippotherapy.

A Long Overdue Update

2009-07-13T20:52:00.002-05:00

Family

First of all, I just wanted to say that Sierra's very first cousin was born today. His name is Remmington James Shalom Klassy. Sierra hasn't met him quite yet but she will soon.

Sierra was very happy to have her CA grandparents here for a visit. We were all sad to see them go.

Sierra got to meet her great grandmother Fedelem for the first time while we were in FL.

This week Sierra's other great grandmother is visiting.

Doctors and Tests

Sierra has quite a few appointments coming up this month and next. Today we went to see her pediatrician for a check-up. Tomorrow we go for a 4 hour video EEG. If the results are good, her local neurologist will consider decreasing the amount of Keppra (anti-seizure medication) that she is taking.

Dr. Hammesfahr wants us to go see an endocrinologist and to have Sierra's hormone levels checked. Brain injured children usually have messed up hormone levels. He says that by correcting those, it will help the brain. Dr. H also wants her to get an MRI, a STECT and another test. We will be doing those next month.

Progress

We have been seeing lots of little improvements over the past couple of weeks. Sierra is doing so much better with weight bearing on her legs! Now she can stand for several minutes at a time. We don't need to hold onto her for balance but she does have to have her hands on something to help her keep her balance. Her balance is improving so much! I put her in a sitting position the other day and she sat there for several minutes.

She has also become much more "talkative" and louder. She still does not make any real tonal type sounds. It is mainly gutteral.

Another encouraging improvement is that she has been so much more awake and alert. Before, she would keep her eyes closed almost all the time even when she was awake. Now, she keeps them open quite a bit throughout the day. She is doing so well. I am so proud of her and so grateful for these improvments that God has given her! We are continuing to pray for more improvements.

I really should take some video clips of her and put them on here. I'll try to get to that soon.

Prayer Request

We are very pleased with Dr. H and how optimistic he is. The only very discouraging thing is that we will have to fly out to FL once every three months to have an appointment (This is not his requirement...the medical board of FL requires it). There is a very slight chance that we may be able to get insurance to cover it. We would really appreciate your prayers that this would happen. We will just have to trust that God will provide the funds to allow this.

A Matter of Perspective

2009-07-10T12:37:00.002-05:00

I do have some updates to write about Sierra, which I will try to get to later today or tomorrow, but this was on my mind so I wanted to write it down.

Today Sierra and I went to the grocery store. While we were there, we saw a young man in an electric wheel chair. I'm guessing that he had cerebral palsy in addition to other disabilities. He obviously could not walk, his hands were spastic and not much use to him, he got around by using a stick attached to his forehead to move the wheelchair. I have to admit, I stared at him. But, it was not out of pity or to gawk.

I stared out of admiration. Here was a young man who was severely disabled but he did not let his disabilities disable him. He was at the store all by himself. The workers seemed to know him. One employee was chatting away with him and then another came to push a cart for him. This young man could not talk, but he had a computer screen in front of him that was a communication device. He did everything with the stick attached to his forehead. He communicated and maneuvered around the store. You could tell that it wasn't always easy to get around with the stick and get it in the right place, but that did not stop him. I didn't see a man to be pitied but a man to be admired and respected, not someone who was disabled, but rather someone who was enabled with determination and strength.

It is my hope and prayer that Sierra will be like this young man, in that she will have the determination and strength to continue going even when life is rough.

Ronald McDonald House and Dr. Hammesfahr

2009-06-15T13:28:00.004-05:00

Ronald McDonald House

In the previous post, I mentioned that we are staying at the Ronald McDonald House. It is so nice here! We can stay here for $10 a night. Nearly every evening someone provides a meal. Last night it was a church. There is a huge kitchen and dining room. In the kitchen there is food that is free for anyone. So even when no one provides a cooked meal, there is PLENTY of food to eat. The room is very nice as well. We have fancy sleep number beds. There aren't TVs in the rooms but there are TV rooms and they have dvd's that you can check out. Some of the TV rooms have computers with internet access as well. There is a fenced in yard area and a playground for kids. Each family is required to do a little chore every day. Our chore is to clean the outside furniture. The whole invironment here is really nice. It is such a blessing to us! It has made me want to begin volunteering at the local Ronald McDonald House.

Dr. Hammesfahr

Today we met with Dr. Hammesfahr. He talked with us about Sierra, her diagnosis, and all the treatments and therapies we have done with her so far. We told him about hyperbarics, stem cells, etc. He was very impressed and said, "Wow, you have done a good job! You have done everything right!" It was so encouraging to hear that coming from a doctor! It was one of those moments where I felt like maybe I am not such a bad mom afterall. :-)

Dr. H is going to start Sierra on the vasodialtors. We went and bought a natural one from a health food store today and turned in the prescription for the nitroglycerin. He told us to start her on Ibuprophen three times a day today and tomorrow. He said that sometimes when the vasodialtors are giving they have the opposite effect at first (closing the blood vessels instead of opening them) because the body is reacting to them. He said that giving the Ibuprophen with keep that from happening.

The bad thing is that he said that Sierra will probably have to be on these meds for quite a few years before we can take her off. The good thing is that it doesn't sound like a whole lot. He said a tube of nitroglycerin may last us a year.

He wants to do an MRI, CT, and STECT.

We appreciate your continued prayers for Sierra. We have heard that what Dr. H does works well in conjunction with the stem cells, that is why we brought her so soon after stem cell treatments. We want to maximaze the effectiveness of both of them.

A Long Day

2009-06-14T19:30:00.002-05:00

Yesterday, my mother, Sierra and I left our beloved Texas for Florida for two weeks. Sierra will be seeing a neurologist here.

We arrived at the Austin airport with no problems. We found our gate with plenty of time to spare. Since we did not buy a ticket for Sierra but had her as an "infant in lap" I didn't know if we would have an empty seat to put her carseat in. About 40 minutes before boarding time, I went up to the lady at the desk (not sure what they are called)...

Me: Excuse me, do you know if there are any empty seats on the plane so that we can put my baby's carseat on one?

Her: No, I don't know.

That was all. She didn't bother looking it up or anything. The past times we flew, the ladies at the desk were so helpful. They would look up to see if there were any empty seats and then move us to the empty seats. This lady was very unhelpful.

I went back and sat down until boarding time. They began boarding and my "friend" started mumbling into the microphone who could board. They got through the first class and the platinum. Then they began boarding groups. We were group 4. There were several passengers near us that were very kind and told us to go ahead and board since we had our hands full with the baby and stroller. They said that the airlines let people with small children pre-board. With there encouragement we went forward.

Me: We weren't sure if we could board since we have the baby.

Her: No. Just because you have a baby does NOT mean that you can pre-board. That would just slow things down.

So we went back to the line. Several of the other passengers were rather indignent and surprised that we were treated like that. It wasn't just what she said. It was her whole snotty attitude that really upset us.

We finally made it down to the airplane. We asked the flight attendant if there were any empty seats. She was VERY nice and went out of her way to help us. She even helped carry the carseat to our seats. It was nice to have some kindness shown toward us after the other lady was so rude.

Our first flight was late in leaving. Once we landed in Dallas, we had to hit the ground running to make our next flight. We were some of the very last to board, but we made it.

We arrived safetly in Tampa, picked up our rental car, and headed to the hotel.

We were in our hotel room when around 1 am we heard a car screech and several loud thumps. We looked out the window and saw a very damaged red minivan swerving through the parking lot at high speed. We were so afraid that it was going to hit our rental car! A minute later, a black mustang, which was also damaged went racing through the parking lot. I went outside to see what had happened.

Apparently two women had invited a man into there room (who knows where they met him). They said that they didn't know him. A lady knocked on there door and said, "I know my husband is in there!" She punched the lady who answered the door. Then she took her van and rammed it into her husband's car. She hit it so hard that it slammed into the truck next to it, which slammed into the van next to it. He took off too. I don't know if the police ever caught them or not. I sure hope so. We didn't sleep well the rest of the night. We're so thankful that they did not hit our rental car though!

Today we checked into the Ronald McDonald House. It is very nice! I'll write more about it later.

Sierra's Story with News 8 Austin

2009-06-03T18:26:00.003-05:00

Last Sunday we had an interview with News 8 Austin. It was really neat because that was the first source of media to actually contact us without us having contacted them first. They heard about Sierra from some other stories and asked if they could come out and do a story on her.

If you scroll half way down the page and click "play" the video will come up.
http://www.news8austin.com/content/your_news/?SecID=278&ArID=241973

News Story

2009-05-30T09:44:00.002-05:00

Here is the latest news story that KWTX did on Sierra. Stephanie Franks has done a great job with all three interviews!

Tomorrow we have an interview with a tv station out of Austin.

Safari Park!!!

2009-05-29T15:57:00.031-05:00

Okay, I know it was a while back that I said I would put pictures up from the Sarafi Park. Well, here they are. This was one of the most fun things we have ever done. It was definitely worth going to see!

Below is a picture of one of the most popular exhibits. She almost stole the show from the animals. We considered asking the Safari Park how much they would give us to put her on display.

Below, Sierra is with one of the animal exhibits. DOGS! Only in China would you see dogs in the zoo.

Hehehehe......everyone in China was amazed by Sierra's hair. Everyone including the animals.

See this cute little guy? It is called a Red Panda or Lesser Panda. It didn't look like a panda at all. It looked more like a red raccoon. We were able to pet and feed the Red Pandas. They were so cute!

This is a Lemur. They were not as sociable as the red pandas but we were able to pet and feed them as well.

That is an elephant walking down the street. For 100 yuan (about $12.70 USD), you could have an elephant ride. It looked like lots of fun, but we didn't feel like spending that much at the time.

But, we did feed the elephants. I thought he would take the carrot off of the stick with his trunk, but as soon as he saw it he opened his mouth up wide.

It is somewhat hard to see with the lighting, but Sierra and I are sitting next to a monkey. She has her hand on it's head.

TIGERS!!!!

Okay this was the most fun of all! There was a tiger pen. See that cage in front of the tiger? The tiger was not in that cage---we were! They had a little truck with a cage on the back. We got in the cage and the truck drove into the tiger pen. There were dead chickens tied to the sides of the truck. The tigers came up and ate the chickens off of it. We were about 2 feet away from these tigers and we even got to reach out and touch their paws. Below are some video clips from in the tiger pen.

Heading Home

2009-05-03T19:36:00.002-05:00

The safari park we went to on Saturday was tons of fun! It was like nothing in the US. I will write about it and put up pictures from it after we get home.

Speaking of home, today we are heading home! YAY! We've had a great time here but no matter where you roam, there is no place like home.

Counting Down

2009-04-27T21:25:00.002-05:00

Sierra is doing much better. She just had that one rough day but the next day she was fine.

She is continuing to improve in her sitting, which is very impressive.

We have enjoyed our time here but are very ready to go home. We will be flying out on Monday, May 4th.

Prayer Request

2009-04-25T02:40:00.001-05:00

Sierra isn't feeling too well. She started spitting up yesterday morning. She was fussy all night. Today she started spitting up and vomitting. They went ahead and started giving her fluids so that she won't get deyhdrated. Please keep her in your prayers and pray that whatever she has will pass quickly and that she will not get worse.

Disappointment

2009-04-24T02:49:00.002-05:00

Today was rather disappointing. They were going to do a lumbar puncture on Sierra. The doctor tried but was unable to because Sierra's spine is so curved. He had the head doctor try and he also was unable to do it. They said that in children so young, there is a very small area in which you can try. They didn't want to try too many areas because they wanted to err on the side of safety and not risk hitting a nerve. They said that if we ever bring Sierra back when she is a older they would have a better chance of doing the lumbar punctures.

We were very disappointed that they were not able to do the lumbar puncture since it would be more effective than the IV, but the doctors here are so good and we trust their judgment. When they brought Sierra out after the two lumbar puncture attempts I expected her to be all upset. She wasn't. She was lying there peacefully with her eyes wide open and listening to everything. I'm glad it wasn't traumatic for her.

They are going to give the last two treatments to her by IV. The good thing is that since we have already begun seeing a few results (sitting and standing) it looks like the stem cell treatments will continue to help her improve.

Overall, we are very disappointed but know that it is in the Lord's hands. We are grateful for the wonderful doctors here and continue to trust God with Sierra's life and whatever improvements He allows her to have.

A Whole New World

2009-04-23T07:04:00.002-05:00

We try to get out of the hospital almost every day except for the days that Sierra gets her stem cell treatments. About once a week we take a driver. That can get expensive though so the other days we usually just go on a walk. The first week and a half that we were here, going to the RT Mart was fascinating. It soon became about as exciting as a trip to Wal-Mart. We also walked down another street that has the Papa Johns and the People's Square.

Yesterday, we decided to take a different route. Instead of going south towards RT Mart or south east toward Papa Johns, we went north. Our walk started out about like all the others. Then we came upon a side street that had some shops. Being eager to explore, we turned down that street. It was a rather narrow street that was full of life.

It was bustling with people, coming and going. The sides of the streets were lined with people selling just about anything you could imagine. There was lots of produce. There were watermelons, pineapples, honey dew melons, apples, oranges, corn, green beans, snap peas, peanuts, etc. The produce looked fresh (not the wilted stuff you buy at Wal-Mart....I plan on going back and buying some once we use up the stuff we already have.)

Some other sights we beheld were people sitting around tables playing games, a baby riding in a basket tied to an elderly lady's back, a scrawny dog looking for scraps, and lots and lots of scooters and bicycles. There were also cars going down the street tooting their horns to clear the way. At one point, there was a traffic jam. There were two cars going opposite directions with hardly any room to pass. They sat there as if they were playing chicken for the longest time. A man dressed in a suit was on a scooter behind one of the cars. He was NOT happy. I'm not sure exactly what he was upset about but he went on and on making his displeasure clear to all. Finally the cars decided to squeeze by each other. There was about 2 inches between their mirrors and I am not exagerating.

In addition to all the produce, there were bakeries and electronic stores. There were a few stores where women were making shoes. We were the only caucasions on the street. This was by no means one of the touristy markets where we had been before. It was enthralling. Many people smiled at us. I was pleased that no one seemed to mind having their picture taken. I think they felt like a celebrity. One man was fascinated with us and our picture taking that he was holding his hands up like he had a camera and showing me what to take pictures of. He was thrilled when I would take the picture he wanted and then show it to him.

Of course the people, like everywhere else, had to get a good look at Sierra and exclaim about this "Waa Waa" (baby). One lady tried to lift her clear out of her stroller. Luckily Sierra was strapped in. One man with produce pointed at his bananas and said, "banana." I'm guessing that was about the only English word that he knew so he was putting it to good use trying to sell us a banana. We didn't buy the banana but we did buy two big pieces of pineapple on sticks. They were about 1/4 of a small pineapple. They were deliciously sweet and cost about $.25 each.

As we continued down the street we saw a covered market area off to our right. We ventured in. These vendors sold FRESH fish and meats. So fresh that most of it was not dead yet. There were cages filled with ducks and chickens and tubs of water with fish, turtles, and eels. At the booths with ducks and chickens there were men in the process of killing and plucking the birds. Then they would set them up on the table to sell. Or if that wasn't fresh enough, you could just buy the live bird and take it home to butcher yourself. One man I saw walked out of the market carying a plastic bag with two live ducks poking their heads out of it and enjoying their last ride. If you didn't want the whole chicken, there was a pile of chicken legs on the table that you could purchase. Yum! Yum! (Oh since I am on the subject of chicken legs, the little convenience stores have an isle of snacks. You know how you can buy a pickle in a bag at a gas station in the US? Well here you can buy a pickled chicken leg in a bag!)

In the covered meat market, there was a man who had 4 dogs! Unlike the scrawny starving mongrels we've seen roaming the streets, these dogs were well fed. He had two German Shepherds and two Collies. You could tell that he really loved his dogs because they were well taken care of, well fed, and seemed happy. That was an unusual sight.

We exited the meat market and continued down our street. It wound around and ended up on one of the main streets. It was almost like a hidden little world in there. You had to know where it was (or like us stumble upon it) to get there. It was very fascinating and we felt like we got a much better picture of what China is really like rather than just the touristy stuff. We are eager to do more exploring and find some other streets like this.

The Blog

2009-04-23T00:29:00.003-05:00

As you may have noticed, I've spent the last few days bringing both this blog and my blog into the 21st Century. The top feature on the right is the date and time currently in China for your reference.

Next is a link that says "Tweet this". This is a shameless plug asking you to promote the blogg on your twitter account.

Below that are the subscription boxes - one for subscribing by email and the other for subscribing using an RSS feed.

The rest are pretty standard widgets that have either been there or don't need further explanation. Also, check out my personal blog at http://jasonjfedelem.blogspot.com/.

First Lumbar Injection Tomorrow

2009-04-22T23:32:00.000-05:00

Sierra has had three treatments by IV injection. The last two will be lumbar injections, with the first tomorrow. Please pray that it would go well.

A Walk to Remember

2009-04-22T08:03:00.006-05:00

This evening Rosetta and I decided to take a walk in the neighborhood of the hospital. We were a couple blocks away when we decided to turn down what looked to be a small alleyway.

It certainly was narrow, but not small by any stretch of the imagination. I bet it went a good mile. It had all sorts of little shops with apartments over them for people to live in.

As we were about a quarter of the way down, there was a traffic jam. There wasn't enough room for two cars to pass. No one wanted to make room for each other. We weaved our way in between just like everyone else and continued on thru.

A little further down we discovered a side alley to this alley where there was a meat and produce market as you can see in the pictures below.

Fresh meat, just laying out on the table waiting to be purchased. It looked VERY fresh.

If chicken feet are your thing to eat, look no further. There are plenty here.

See those ducks behind you? You're next, buddy

We came back out on the street and perused the other shops which sold everything from electronics to cigarettes.

We walked the rest of the alley and came back out on the main road.

Typical street scene complete with motorized rickshaw

Men being driven back to the yard after a day of work.

Everywhere we go, the women admire Sierra.

This man was hanging out with the women in the above picture and seemed amused that we wanted to take his picture.

Two women talking. One drives an electric bike and the other and electric rickshaw.

Posted from Hangzhou at 9:03 PM on April 22.

Hospital Pictures

2009-04-22T07:35:00.005-05:00

We thought we'd show you a little of where we are staying.

The full name of the hospital, as shown in the photo is Zhejiang Xiaoshan Hospital. Beike Biotech is on the 20th floor.

An outside view of the hospital

One of the balloon vendors that stand outside the front of the hospital.

They are not official taxi drivers but a lot of people wait around the front of the hospital and make a quick buck driving people around the city.

The following video shows you our room.

Posted from Hangzhou at 8:35 PM on April 22.

Praise God from Whom All Blessings Flow!

2009-04-21T22:00:00.004-05:00

Today in therapy Sierra did something incredible! She sat unsupported! This is truly a miracle. She has never been able to do this. Every time we would try to sit her up she would go flopping backwards.

Here is a video clip of it. Sorry it is sideways. :-P I keep forgetting that if I hold the camera sideways the video will be sideways.

Posted from Hangzhou at 11 AM on April 22, 2009

Standing on the Promises

2009-04-21T19:39:00.003-05:00

We came to China in faith that God would do a mighty work. We were also told to not expect any improvements for 4 months.

I don't know if this was due to stem cells or not, but Sierra stood for 2.5 minutes yesterday! Her previous record was 45 seconds.

We're excited about this but obviously we want to see her repeat this. Time will tell. Thanks for all your prayers.

Posted from Hangzhou at 8:39 AM on April 22.

Random

2009-04-16T20:53:00.005-05:00

WEATHER

The weather here has been very nice. The temperatures have been about like there are at home. Today the high is supposed to be in the 70's and tomorrow it is supposed to be in the 80's. The other day it was nice and warm here. All the poor Yankee's were dying from the heat. We didn't even have our air conditionair on. We had about three different Chinese people come in and tell us that we could turn the air on. They were rather shocked that we did not want to turn the air on. Something that I can't figure out is that 90% of the people here seem to wear long sleeves or a jacket no matter what the weather is like.

FOOD

I am rather tired of the Chinese food. It is all so greasy. If I am going to eat greasy food, I want it to be something like fries, onion rings, etc. not Chinese stir fry or vegetables. One of the nights we were here I was dreaming that the RT Mart (which is like a Super Wal-Mart) was selling Blue Bell ice cream. It was $10. for a half gallon but I was going to buy some. Then yesterday I was dreaming about good ol' American cheese. They don't eat much cheese here.

We did bring some packaged food. Today I will cook all of our meals here instead of ordering out. We brought some blueberry muffin mix from home. I was going to attempt to make pancakes the other day. My attempt at pancakes was a miserable failure. (They don't have a stove here just a cereamic hot plate that gets way too hot for pancakes). After burning what was supposed to be a pancake, I came up with a clever plan. I took a ceramic coffee mug, poured some batter into it and then put it in the microwave. Ta da! Blueberry blobs! If you closed your eyes and used your imagination, they could almost pass as blueberry muffins. They say that necessity is the mother of invention.

HELLO

We have gotten a kick out of how the cleaning ladies use the word "hello." Here, if you are Chinese and only know 5 English words, you use those 5 words as much as possible it doesn't make a bit of a difference if you use them correctly or not.. If the cleaning ladies just mopped they wiill say, "Hello, be careful." Jason took some dishes to the kitchen to wash and the woman said, "Hello" and then motioned for him to leave and that she would do them. They tend to use "hello" more as an attention getter than anything. What was hilarious was the other day when one of them was doing hand motions to try to tell Jason something. Neither of us understood what she was trying to say. So Jason said to her, "Hello" and motioned for her to follow him. He took her to someone who did speak English and got them to translate.

TREATMENTS and FAITH

We have been forewarned that it is very common for children who have had seizures in the past (even if they haven't had them for years) to have a few seizures after the Stem Cell Treatments. They explained why this was the case and it made sense, but I don't know if I can explain. Apparently when the stem cells get to the brain, they cause lots of activity. All that activity can sometimes be overload at first for a kid who has had seizures. Thus initially it causes more seizures. However, in the long run, it reduces the seizures. A mom here was telling us that her daughter usually has several seizures every day. She had some pretty bad seizures eight hours after the lumbar punctures, but now that she has finished all of her treatments they have seen a reduction in seizures overall. In a way it is an indication that the stem cells are getting where they need to go.

Apparently the lumbar punctures are more likely to increase the chance of seizures than the IV because the stem cells have a direct route to the brain. We still don't know if Sierra will be getting lumbar punctures or not. Today she receives her second IV. We are hoping that she will be able to get some lumbar punctures because they are more effective. At the same time, we are a bit apprehensive about her having seizures. We know that if she does have any seizures, it will be scary for us since she hasn't had any since a week after she was born. We've been talking about and decided that we still want the lumbar punctures if she can have them. We are just preparing ourselves mentally that she may have some seizures. The verse that God has been bringing to mind every since right before we left to come here is, "God has not given us a spirit of fear, but of power, and love, and a sound mind." We know that God has brought us this far and He doesn't want us to fear what may happen. He is in control and we will entrust Him with the all the side effects and results.

To close out this post, here is the very first picture that I have ever taken of Sierra smiling. This was during her therapy. Sierra seems to like movement a lot. The only smiles we have gotten out of her have been related to movement.

Posted from Hangzhou at 9:53 AM on April 17th

Hefan Market

2009-04-14T06:43:00.007-05:00

Today all Sierra had was physical therapy in the morning and electro therapy in the afternoon. We went to the Hefan market this afternoon

This man is selling green tea at the market place

Dairy Queen. Thats what I like about ~~Texas~~ China!

The below video is our driver Jack negotiating for something I wanted. As you can see, it was quite a show and 15-20 people were standing around watching. It was hilarious watching him.

All pictures and video Copyright 2009, Rosetta Fedelem

Posted from Hangzhou at 7:43 PM on April 14, 2009

Therapy and First Treatment

2009-04-13T04:26:00.002-05:00

Last week the doctors did a lot of tests on Sierra and evaluations. She had several physical therapy sessions last week.

This was from today's therapy session. Kerri is her therapist, seen above, and she is an outstanding therapist and makes Sierra work really hard. It looks like she may be having some success teaching Sierra to roll over.

At about 2:30 this afternoon they prepared her for the treatment and put the IV in her.

Then they started the IV.

Now she is resting and listening to Tom T. Hall with me while Rosetta makes dinner. Thanks for all your prayers.

All Pictures Copyright 2009, Rosetta A. Fedelem

Posted from Hangzhou at 5:26 PM on 4/13/09

Going to Market

2009-04-12T06:28:00.002-05:00

We decided to go see some of Hangzhou this afternoon. Our driver was Sam.

Our first stop was the cloth market where according to this sign they mangle the fabric. Then we went to the book market but the prices there were ridiculous.

Our third stop was the silk market. We got some good deals here. All in all it was a fun afternoon. We are back at the hospital now. Sierra's first treatment is tomorrow.

All pictures Copyright 2009, Rosetta Fedelem

Posted from Hangzhou at 7:28 PM on 4/12/09

He is Risen!

2009-04-12T01:08:00.002-05:00

He is risen indeed! Today is Resurrection Sunday. We got up this morning and read about Christ's resurrection. Sadly, we didn't have a church service to go to. We plan on listening to the Easter sermon tomorrow.

We have been here 6 days now. God has been good to us. It is amazing to think of all that went into bringing this to pass and yet here we are. It is only through God's goodness that we are here.

We have been enjoying our time here. Being in a foreign country really makes us realize how much we take for granted. We are so blessed and tend to forget how good we have it. While here, I have not seen anything that resembles a church.

Have a blessed Resurrection Day and give thanks for the blessings God has given you, the best of which was sending His Son to die for our sins. But Praise God, He did not stay dead. HE IS RISEN!

Posted from Hangzhou at 2:08 PM on 4/12/09

If a Picture is Worth a Thousand Words...

2009-04-12T00:15:00.001-05:00

...then this post will be worth 24,000 words.

In the Austin airport, getting ready to leave

Street scene in Hangzhou. Note the car parked on the sidewalk.

Most American restaurants here don't taste very American. They have Chinese flavors. Most people get around on electric scooters or bikes as seen in this picture.

Read the sign carefully. The translations here are not usually accurate and sometimes are downright funny.

We're getting pretty good with chopsticks. The chow mein was pretty good. The noodles were more al dente than I was used to.

Bicycles are used to transport everything, in this case steel beams. Oh, and this one is pedal powered, not electric.

Garden in front of a government building

Pagoda in a park

The escalators here don't have stairs, they're flat.

The grooves in the escalator grab some rubber blocks on the cart which allows them to easily transport carts back up to the third level.

Our hotel room

View from hotel room

Another view from the hotel

Leaving the hotel with all our luggage

People flying kites in The People's Square

The People's Square

On a bench in The People's Square

The People's Square

Kid getting a rollerblading lesson in The People's Square

Papa John's was the exception when it comes to food. It's an American restaurant that tastes like it's American equivalent.

Their delivery vehicles are a little different though.

So that's how you say "Papa John's" in Chinese.

Someone transporting a China cabinet down the street on a wheeled cart.

All pictures copyright 2009, Rosetta Fedelem

Posted from Hangzhou at 1:15 PM on 4/12/09

A Taste of Heaven 4-11-09

2009-04-11T08:05:00.001-05:00

Today we went out for a stroll. We probably walked a good 4 miles in all. We are becoming quite familiar with the area and are learning that the best way to not get run over is to do as the Chinese do. We follow their example and cross the streets when they cross. There are so many people walking and on bikes, scooters, and wheeled contraptions that you never would have imagined existed that the drivers are very aware of the foot traffic.

We walked through a park called "The People's Square." It was very beautiful! The park was adorned with various flowers and had lush green grass, half circle stone benches, waterfalls, and birds!!!! (I had begun to wonder if birds even lived in China because in the days that we have been here, I had not seen any birds.) There were quite a few people in the park. We saw two ladies with dogs. Of course I had to stop and pet them. It had been almost a week since I have petted a dog! How sad is that?! I admired the dogs and the ladies admired Sierra and said, "Like a doll." Yup, doesn't matter where in the world we are, literally, people say Sierra looks like a doll. Back to the park, there were so many people flying kites in the park! It was fun watching them. There must have been 15-20 kites in the air and none of them were tangled. There was also an area set up where a man was teaching little bitty kids how to rollar blade. He had cones set up and was having them go around them.

After our stroll through the park, we continued down the street to our destination which also happens to be the noteworthy occassion for which this post is titled. PAPA JOHN'S!!!!!! Who would have thought that there would be a Papa John's in China? Last night while we were visitinng with the Australian family (LOVE their accents!) they told us that the Papa John's was very good. After my disappointment at KFC, I was guarded, but oh so eager to have some good ol' American food.

We have been eating a lot of Chinese food. It is good, but due to my own pickiness, there is a limited number of things that I order. Also, I can't get over how greasy lots of the food is. The fried rice is especially greasy.

Okay, off of that rabbit trail and back to good food. We found the Papa Johns. We were a bit surprised to learn that it was upstairs. Jason grabbed one end of the stroller and I grabbed the other and we hauled Sierra up. It wouldn't have been so bad, but every 5 or steps the stairs made a 90 degree turn which made it kinda difficult to get up, but the rewards were well worth the small hassle. Papa John's in China is set up a little nicer than in the US. It is more like a restaurant than a pizza place.

The workers there did not really speak English. Luckily the menu was in both Chinese and English so we were able to point to what we wanted. We ordered a large meat pizza. We were a bit skeptical and anticipating a disappointment (I mean hey KFC taste Chinese, Pepsi does not taste like Pepsi in the US, ribs come as chopped up meat with pieces of bones mixed in, chicken is chopped up meat, bones and all and then cooked so you have little pieces of bone that you either have to spit out or choke to death on). But it was WONDERFUL!!!! HEAVENLY!!!!!! OH SO GOOD!!!!!! YUMMY!!!!!!! I could go on and on but I think you get the point. :-) I will end on that note so that I can go get ready for bed with the wonderful memory of pizza to dwell on.

Posted from Hangzhou at 9:05 PM on April 11, 2009

Jason's Update 4/11/09

2009-04-11T06:25:00.001-05:00

We've been here for a few days now and things are going decently. They were concerned about Sierra’s oxygen saturation and so have her on 1 hour of oxygen 4 times a day. However, the message that I don’t think we were able to communicate to them is that since Sierra’s finger is so small that its hard to get good contact and therefore they were getting false low readings. I think we got the nurse tonight to understand that.

The last few days have been rather boring with nothing much to report. We’ve been eating the cheap Chinese fast food, which for two of us usually comes to $1.50/meal and is delivered to the hospital. Tonight we splurged and went to Papa Johns. I was expecting it to taste like Chinese pizza, but it actually tasted just like it does in America. What’s funny is that their delivery vehicles are bicycles with a rack on the back for the pizzas.

Nothing much to report. Things are going fine and we appreciate all the prayers.

Posted from Hangzhou at 7:25 PM on 4/11/09

The Hospital

2009-04-10T00:10:00.001-05:00

THE ROOM

We are on the 20th floor of the hospital. Our room is very nice. It is more like a hotel room than a hospital. The floors are wood which gives the room a warm and homey feel. One whole wall of the room is all glass. It is a huge glass window that allows sunshine to come in. Looking out our window we see lots of buildings, apartments and just below us a big garden with all sorts of vegetables growing. We have a tiny table, two chairs, a big tv, a dvd player, a refrigerator, a closet, and water cooler.

THE STAFF

The staff consists of patient representatives, and drivers. The patient representatives do the translating for the patients and doctors. They also take care of any needs we may have. The three we have met are Lucy, Johnny, and Luca. They are all very nice. Lucy is the one we have seen around the most. Lucy and Johnny are both Chinese. Luca is Italian.

THE DOCTORS & NURSES

The doctors here are very good. They are quite thorough. I guess I had kind of expected that we would get here and they would start giving her stem cell treatments. That isn't the case at all. They do a lot of tests and evaluations so that they become much more familiar with the patient before they do any of the treatments. They are going to do an x-ray on Sierra sometime to take a look at her lungs and spine. Because her spine is curved, they are not sure if they will be able to do the lumbar puncture or not. If I understood correctly they were saying that it may not be as effective to do the lumbar puncture because of the curved spine. The doctors are going to have a meeting to discuss things after they get all the test results. Most of the doctors do not speak English.

The nurses are also very good. They are very caring. They took some blood from Sierra today for tests. They were able to get it right away. I was very happy that I did not have to watch them prick her several different times. Most of the nurses understand English and can speak a few words.

THE THERAPIST

Kerri is Sierra's therapist. We are very pleased with her. You can tell that she really loves the children that she works with. Today she was working on teaching Sierra how to roll over. Sierra will be receiving 2-3 types of therapy every day for 5 days out of the week.

THE FOOD

In China, food is not served to patients in the hospital. They have a little kitchen area here where we can cook things in the microwave or on a hot plate. They also have a menu that we can use to order from a local restaurant. There is no fee for delivery and the food is very inexpensive. Jason and I ate lunch for about $1.50 for the both of us.

THE PATIENTS

It has been so much fun meeting all the other families that are here. It is also very encouraging! There are people here from around the world. There are people here for a variety of reasons.

There are two adults with MS. I was talking to the family member of one of them. He was having problems with incontinence and having to go to the bathroom 5 or 6 times a night. Now, he is able to sleep 8 hours straight!

There are several children with cerebral palsy. One of them is here for the second time. After his first time here, he stopped throwing up (he used to throw up several times a day) and he went from eating mush to eating stuff like nachos. Another little girl has gained better head control and is now able to drink out of a straw.

There is a little boy with autism. He is 5 1/2. His mom said that she has been working for three years at showing him pictures from a book and then asking him to say the words (i.e. showing him a picture of a car and asking him what it was). He was never able to. During his time here, he started doing it! She was so thrilled that she said, "Even if that is the only improvement, it was worth it!"

STEM CELL TREATMENTS

As I said above, Sierra may not be able to get lumbar punctures. We trust the doctor's decision. If she is not able to have the lumbar punctures, she will get all IVs. Her first treatment will probably be on Monday.

Thank you for all your prayers. We covet your prayers all the time.

Posted from Hangzhou at 1:10 PM, April 10

Shopping in Hangzhou

2009-04-09T23:41:00.001-05:00

Some of our blog posts are going to overlap a bit because we are both so long winded and like telling our own versions of events. =)

On Wednesday, Sam, a driver from the stem cell company came and picked us up. He took us to the bank where Jason got some RMB. After that, he was going to take us to the RT Mart and then back to the hotel. He pulled up in front of the market, helped us get out and then said, "Sawde, Sawde" (sorry, sorry) "Taxi hotel" while handing us a paper with the address for the hotel written on it. He climbed back in the car and away he went.

Here we are in the middle of a foreign country where no one speaks English and we weren't exactly sure where we were. One thing that we have learned quickly is that if you don't know what to do or where something is, just observe what the others are doing and do as they do. By doing this, we found the entrance to the RT Mart.

The first floor was basically like a mall with lots of little stores. We went up the escalator (which is really fun!) to the third floor. The escalator by passes the second floor. The third floor was like a Wal-Mart. You could buy pretty much anything that you would at Wal-Mart. We didn't spend much time on that floor.

We took the escalator down to the second floor. The way they have it set up, you have to go to both floors in order to get out. You can't just go to one floor or the other. The second floor was the produce/grocery section. As soon as we got off the escalator the smells were very poignant. Much to my horror, there were some dehydrated ducks hanging right there in the open. I couldn't look at them for very long.

The fruits though were amazing! They had such a wide variety. They also had lots of dried fruits that were delicious as well. We have been enjoying trying out all the unusual fruits.

After picking out a few things, we got in a long line. After being in the line for about 7 minutes, Jason said, "I don't think this is the cash register. I don't see any money being exchanged." After surveying things a bit more, we realized that we were in line for eggs! The eggs are sold by weight and put in plastic bags. We got out of that line and wandered around some more until we found the actual check out.

We found that where ever we go, we can't stand in one place for very long. Otherwise Sierra steals the show. There was a group of about 15 ladies gathered around her. They were all smiling, touching her, and encouraging their babies to touch her as if she is lucky charm. Everyone loves her wild hair.

After succesfully leaving the RT Mart we began wandering around trying to find the hotel. Our feet soon got tired so we hired a taxi (well we honestly aren't sure if he was a taxi or not his vehicle wasn't marked) to take us back to the hotel.

We had been warned that the beds here were hard and felt like box springs. That was a gross exaggeration. The beds at the hotel felt like a pile of bricks! I felt like I had bruises after sleeping on them. Luckily, the beds here at the hospital have a nice padding on them and are much more comfortable.

Posted from Hangzhou at 12:41 AM on 4/10/09

Unusual customs

2009-04-09T06:55:00.000-05:00

On Wednesday the driver picked us up as promised and took us to the bank. The whole front of the bank was a glass wall and when you went in you went to the booth where the teller sat behind a glass division. When I was about to leave I started walking back to the door to leave when the driver signaled me to stop and hit this button on the wall. The glass panel slid aside and let us out. You wouldn’t have known it was a door otherwise.

The driver then took us to RT Market, which is the closest thing they have to a Walmart. When he dropped us off he was very apologetic but said he couldn’t wait for us and there was no charge. We went into the market and wandered around. The first floor was much like a mall in the US with lots of little specialty shops. We decided to go to the second floor and went to the escalators. The escalators here are quite different than in the US. Instead of having stairs they are completely flat just like a conveyor belt. It turns out that the escalators skip the second story and go to the third. This floor was much like a WalMart without the food. You then go back down to the second story, which is the grocery store. The first thing you see when you enter on the left is dried, dehydrated ducks. It made Rosetta’s stomach do flips just looking at it.

We bought a few groceries and made it thru the checkout line and back down to the first floor and out. We wandered around the city a little bit trying to find our hotel but ended up taking a taxi back. Fortunately Lucy had written the name and address of the hotel in Chinese for us so we just had to show it to the driver. The taxi cost 10 RMB, which is about $1.30.

This morning we went down to breakfast. Yesterdays breakfast had been pretty decent so I decided to try a little of everything. This was fine until I got to one dish and realized it was chicken with the bones still in it. I remembered reading in the travel guide that they cook the chicken with the bones in it and its perfectly acceptable to spit the bones out on the floor. I decided not to push my luck and instead put them in the ashtray on the table. Oh yes, you can smoke just about anywhere over here.

After breakfast we took a stroll around the city for about two hours and were proud that we were able to do it without any difficulty. We went to the supermarket again and bought some produce .

We went back to our room and packed all our stuff for the move to the hospital. The one piece of sage advice I’d have is “when you travel internationally, pack as light as you can”. Now granted we’re living here for a month so it’s a little different, but man, we have a lot of stuff. I think it came to 7 suitcases, a laptop bag, a diaper bag and a backpack. Ouch. It took two trips to get it to the hospital in the car.

We’ve been here since noon just getting settled in and talking to the doctors and other patients. There are people here from all over the world. Currently Malaysia, Australia, Azerbaijan, Canada and the USA are represented.

We ordered out for dinner. It was two large rice bowls and cost 10 RMB, which, as stated above, is about $1.30. There wasn’t even a charge for delivery and they don’t tip here.

That’s all for now. Thank you for all the prayers and please keep them up. Sierra needs them and we need them.
Posted from Hangzhou on 4/9/09 at 7:55 PM China time

Long Trip

2009-04-07T20:27:00.000-05:00

Jason already posted his version of our trip, but I thought I would throw my 2 yuan in as well.

Sunday was a long day. We went to church, ate lunch at church, and then headed home. We had to do last minute packing and finish writing instructions for the dog sitter. Around 6pm we left for my parents house. The plan was to sleep until 1:30 am and then at 2:00 am leave for the airport. HA! Jason did get a little sleep, but I didn't sleep a wink.

We made it safely to the airport with our 5 check in bags, two carry ons, laptop, crammed diaper bag, cooler with breast milk, stroller, and carseat. We had been a bit apprehensive about whether all the check in bags were under 50 lbs or not, since all we were using to weigh them was a bathroom scale. Our heaviest bag was 48 lbs on the dot. Yay! At the airport we bid our farewells to my family.

After checking in and making it through security, we sat and waited for about 45 minutes before boarding. During that time we enjoyed the sandwhiches that my dad had so thoughtfully packed for us. Around 5:30 we boarded the plane. We were a bit miffed that they don't seem to do the whole "now we invite passengers with young children to board" thing anymore. We had to shuffle through the pack of people with our ridiculous load. The plane from Austin to Chicago was jam packed. Even the first class was full. I think there were about two empty seats on the plane and that was it (luckily one of those was next to us.)

We had been told that once we got to Chicago, our next gate was only 5 gates away. Of course we didn't have it so easy. Our plane ended up landing at a different gate so we had a nice little hike to get to our other gate.

While we were waiting for our flight, we heard someone announce, "Will the Fedelmans please come to the desk." (Yes, I know, the name is spelled wrong. Everyone likes to say Fedelman instead of Fedelem.) Jason went up at first and they asked him for Sierra's passport. I took the passport to them. They said that somehow her information was not in the system. The lady said that she doesn't know how we were able to make it there without that information. She said that if she had not caught it, we would not have been able to board the plane. She began working on that, but was not familiar with how to do it. She had to ask several other people. In between working on getting the information in, she was calling out, "We now invite ______ to board." It made us a little nervous to see everyone boarding the plane and our situation not resolved. Everything worked out, and we were some of the last to board. She ended up giving us a whole row of five seats, which was so nice!

The flight was long, but not unbearable. I think the first seven hours were the longest. We were able to doze a bit on and off, watch movies, and play games. The flight attendents were all very nice. They fed us three meals and gave us lots of drinks. Sierra was a real trooper and traveled well.

We arrived in Shanghai around 1:50 pm local time. We weren't sure what to do to go through customs. We just kind of followed the crowd and ended up in the right place. They let us go through a special line since we had the baby. That line was MUCH shorter! All we had to do to get through customs was give them our passports and our arrival cards. It was much simpler than I imagined.

Picking up the bags was a challenge. I ended up wearing the baby in the Ergo, pushing a stroller loaded down with stuff with one hand, and pushing a cart of suitcases with the other hand, while Jason dealt with all of the other luggage. The next step was to find our driver. As we entered the area where people were waiting, all the women started smiling and making comments about Sierra (they were saying something that sounded like "wowwow" I'm assuming it has to do something with hair.) That really did not feel much different than at home, because our wild headed child always solicites comments. :-)

We walked down the row of people and found our driver holding a sign with Sierra's name on it. We motioned to him and he jumped in to help with the luggage. He motioned for us to follow him. He certainly did not waste any time! I was wondering what would happen if we couldn't keep up with him. Jason was behind me and I was trying to decide if Jason got held up if I would keep up with the driver or lag behind for Jason. Jason must have read my mind because he said, "Don't loose that guy! If we get seperated keep up with him and I will catch up." Luckily we didn't have to worry about that.

We were able to fit everything in the van and begin the 2 1/2 hour drive to Hangzhou. Our driver did not speak a lick of English so it was a fairly quiet ride. At this point Sierra was tired of being in her car seat but she was able to endure the last leg of our journey.

The roads here are better than I was expecting. They do have English translatioins on many of the signs. Most of the trip here was filled with scenes of agriculture. There were rows of fields. Some were what I am assuming were rice fields, others had pretty yellow flowers. I'm not sure what type of plants the yellow flowers are. Next to the fields were apartment type buildings. They looked rather old and somewhat dilapitated. Many of them had laundry hanging out from the windows. The thing that struck me, was how many of them had solar panels. I would say a good 60% of them had solar panels.

In all the fields that we passed, I did not see a single tractor. There were also some interesting structures. They looked like barns made out of hay. I'm not sure what they were or what was in them.

The driving here is not for the faint of heart. Lanes and signals are overrated. I'm not sure why they even put lines on the roads. They must just be for decoration. The motto here seems to be, "If there is room, the car will fit." It doesn't matter if "room" only allows a few inches on either side of the cars or if that "room" is in a lane that is supposed to have oncoming traffic. Up until yesterday, I never though much about whether or not car horns ever have to be replaced. After all the music on the road, I wondered how long their horns last.

We made it to the hotel in one piece. It is rather amusing trying to communicate with the people here when they understand very little English and we understand no Chinese. Everyone has been very nice and helpful (once they understand). We met Lucy, the patient coordinator and she was very nice. She is going to send a driver later today to take us to the bank and the supermarket. Tomorrow we will be going to our room in the hospital which will be "home" for the next 25 days.

I am proud to say that we are getting quite skilled at using chop sticks. We still have a long way to go, but we didn't do too badly.

Well I'm going to say good-bye for now. Thanks for all the prayers.

Posted from Hangzhou on 4/8/09 at 9:27 AM China time.

In Hangzhou

2009-04-07T05:49:00.000-05:00

We took off this morning around 6 am Texas time and had a two and a half hour flight to Chicago. It was your average domestic flight, cramped and crowded.

At 10:40 AM we took off from Chicago on the long 14.5-hour flight to Shanghai. I was expecting it to be cramped, crowded and generally unpleasant. Fortunately, it was a rather pleasant flight. Due to the earths curvature it is a shorter distance to fly up to the North Pole and around thru Russia than it is to fly straight across the Pacific. The North Pole looks like a whole lot of ice, but then what did I expect? Tim Allen?

There were free movies on this flight on your own personal monitor and you could pick which one you wanted to watch within their selection. I watched two. The first was Bedtime Stories, which was typical mindless drivel that comes out of Hollywood but was good for a few laughs. The second was Valkyrie, which was the last assassination attempt against Hitler. I enjoyed this one a lot more. I also am reading Jeff Sharra’s novel “Gone for Soldiers” about the Mexican-American war.

We finally touched down around 1:30 China time. We cleared customs and found our driver no problem.

The first thing you notice when you leave the airport are the fields. There are buildings that are between three and five stories tall that people presumably live in and have their field right outside. This runs on for almost the whole two-hour drive from Shanghai to Hangzhou (which we found out is pronounced hong-JOE).

Traffic is crazy here. It seems as if the majority of vehicles fall into one of three classes: the big dump/delivery trucks, the vans, and the motorcycles. A lot of the motorcycles have been converted into three wheel rickshaws and they zip right along in them.

We got to our hotel around 5 pm local time and are now all set up and waiting to meet our case worker who called and said she’d come by.

Thanks for all your prayers!

Posted from Hangzhou on 4/7/09 at 6:49 PM China time

Here we go!

2009-04-05T20:59:00.000-05:00

It is with hearts full of gratitude that we head on our journey to China. We are astounded by God's goodness. He has used SO many people to bring this about. We are truly humbled by the outpouring of love, support, and prayers given to us by hundreds of people. It is because of God using you that this is possible.

In a few short hours we will drive to the Austin airport. We have to be there at 4 am tomorrow morning. From there, we will take a short flight to Chicago. At Chicago we will depart for Shanghai which is a 14 hour flight. Then we will take a car ride to Hangzhou which is about 2 to 3 hours south of there. We are arriving a few days early. The first few days we will spend relaxing at a hotel. Then on the 9th we will move into our room at the hospital, which will be our home for almost a month.

We appreciate your continued prayers for our journey and especially for Sierra.

We will update the blog as soon as we are able.

Prayer Request and News

2009-04-04T12:07:00.000-05:00

Please pray for Sierra. She is acting like she is getting sick. She is grumpy, spitting up, and feels a bit warm. Please pray that God would restore her health and that this sickness would not prevent us from going to China on Monday.

In other news, the news station did another story on Sierra last night. Here is the link. www.tinyurl.com/sierrasstory

One Week!

2009-03-30T23:29:00.000-05:00

Lord willing, we will be flying to China in one week! We are VERY excited. We would appreciate everyone's prayers.

No More Vomiting and VISAS!!!!!!

2009-03-18T13:18:00.000-05:00

I don't know what was up with Sierra the past week. She was vomiting every single day, at least once a day. I was able to keep enough liquids in her that she did not get dehydrated. We did not end up going to the doctor. Yesterday was the first day in 8 days that she did not vomit. YAY! She did not have a fever or anything. My own personal theory is that she was dealing with some after effects of her hospital stay. She was given so many drugs and antibiotics that it wouldn't surprise me if she had an ulcer or something. We've been giving her lots of probiotics to help replace the ones that were wiped out by the antibiotics.

Our Visas arrived yesterday!!!!!! Now we are pretty much all set to go to China! We have been making lists, checking them twice (more than twice actually), buying things, and figuring out how we are going to pack it all. We are very excited about the trip!

Let the Triathlon Begin!

2009-03-11T13:21:00.000-05:00

The next few months are going to be so busy! We are going to be doing three different things that should all work together to achieve the maximum effectiveness of all of them. I feel like we are going to be doing a triathlong of treatments. :-)

Umbilical Cord Stem Cell Treatments

Lord willing, we will be leaving on April 6 for China. We are VERY excited about going and looking forward to what the results might be. To be quite honest, we may see no results or we may see dramatic results. We are really praying that she may gain some vision. Here is a quote from Kirshner on some of the improvements that others have seen.

86% of CP kids of all ages under 18 get some type of improvement. Results can vary greatly depending on the childs level of function prior to treatment. I never like to compare the kids because as we know they are all very unique.

One can however make some general statements about the types of improvements that are often reported such as;

Increased ability to motor plan, improved vision, increased cognition, speech, swallow, eating, increased social interaction, smiling, laughing, kissing (one of my favs) and so on.

Vasodialation with Dr. Hammesfahr

The last two weeks of June, Sierra and I will be going to St. Petersburg, FL to see a neurologist there. He does something that no other neurologists in the world do. Dr. Hammesfahr was nominated to receive a nobel prize in medicine for his work with brain injured patients. Here is some information from his website www.brainandstroke.com

We have proven, documented results treating the patients others have given up on. Dr. Hammesfahr is a board certified neurologist who has pioneered a major new therapy for treating neurological conditions such as stroke, brain injury, autism, cerebral palsy, migraine, and others. His technique, awarded a patent for its innovative approach, helps to improve blood flow into damaged or poorly functioning areas of the brain. Damage or narrowing of blood vessels is seen in a large number of chronic neurological diseases. Medicare and others have reviewed and found his technique to be effective and successful in helping those others were unable to help, even years after their injuries. Thousands of patients from all over the globe have been treated successfully over the past 20 years. We have documented success of their recovery and some of their stories are included in this website. We are bringing families together and rebuilding lives...one patient at a time.

Hyperbaric Oxygen Therapy

Ninety days after receiving stem cell treatments, we will begin putting Sierra in the hyperbaric oxygen chamber. We were able to buy a chamber locally at a great price and thanks to Sierra's great-grandmother Fedelem, we have an oxygen concentrator to use with it! Doing the hyberbaric treatments will be like "adding Miracle-Gro" (as others have said) to the stem cell treatments. It will help those new cells grow.

Missing Grandma

2009-03-10T11:54:00.000-05:00

After having her out of state Grandma here for over a month Sierra got spoiled by having both of her grandmothers to cuddle her, talk to her, and love on her.

We are VERY grateful that Jason's mom could come out while Sierra was in the hospital. She helped out so much and was such a blessing! We considered kidnapping her and not taking her back to the airport. :-) The ladies from church told her that she was just going back long enough to pack her bags and get her husband, and then she was moving here. =)

Sierra is doing fairly well. The hospital stay really gave her a set back though. Being paralyzed for so long and being made to lay on her back made her lose the muscle strength that she used to have. She has been wanting to hold her head way back instead of up. We have to fight her to keep it in the right position.

We ended up finding a good chiropractor here in Temple. We do miss the nice folks in Austin, but her new chiropractor is very good and so sweet! It only takes 10-15 minutes to get there as opposed to 1 hr 15 min! We are loving all the extra time!

Great Fundraiser!

2009-02-28T00:01:00.000-06:00

Just wanted to give a HUGE THANK YOU to Steve and Gina Daramee, 3 Days Lost, El Chico and everyone who came out! It was a great fundraiser! In addition to the great food and music, a nice amount of money was raised for Sierra.

Thank you all! We thank the Lord for you!

Sierra....

2009-02-25T09:44:00.000-06:00

...is a fighter. She is such a determined little girl. She has to work extra hard at things but that doesn't stop her.

...has beautiful curly hair. We aren't quite sure when it started curling. When she was 4 or 5 months old it was straight. In the past month we have had two people ask us if her hair is naturally curly. :-)

...has comments from people at stores saying that she is beautiful and looks like a porcelain doll.

....favorite things to eat are fruits.

....appetite is almost double what it was before we went in the hospital.

....is very picky about who gives her a bottle, only Mama will do.

....will pretend to fall asleep if she is being fed something she doesn't like.

....loves being spun around. This is the only way we can get a smile out of her.

....has a miniature horse but needs to ride him more often.

....has beautiful blue eyes (her mommy and daddy don't have blue eyes!)

....will let out a long sigh if she was complaining and you finally figured out what she wanted.

....has the cutest sneezes ever!

....has painted toenails.

.....has earrings.

.....is getting her first tooth in.

.....likes having Pancho lay on her feet.

.....likes having Buck rest his big head on her.

.....tolerates having her face "cleaned" by Shylah. She usually makes a face though. :-)

.....loves taking bathes.

.....has touched many lives.

.....has strengthened, mended, and restored relationships (God has used her to really strengthen our marriage. It wasn't bad or weak before but it is much stronger now.)

....has been a witness for the Lord to many people.

....is our precious daughter that we love so much!

Changes

2009-02-23T07:22:00.000-06:00

Sierra has been doing really well. She still is not back up to speed yet, but she is getting there. We realize that it will take time for her recovery. She was a very sick little girl. One of her doctors said that she suprised a lot of the doctors and nurses.

On the positive side, while in the hospital and since she has been home, Sierra has been having pretty regular bowel movements on her own. Before, we were having to give her supossitories every day.

She has also gained quite the appetite. She is eating a lot more food and drinking a lot more milk than before.

On Friday we took her to the chiropractor in Austin for a last visit. They have been wonderful in working with her. We appreciate all that they have done for her! Unfortunately we are going to have to find something closer. The six hours of drive time every week to get there (about 1.5 hours each way twice a week) is getting to be too much. We are also trying to cut back on money in every area possible so that is an area where we can save on gas. Please pray that we will find a good chiropractor locally.

Fundraiser for Sierra

2009-02-22T08:11:00.000-06:00

On Thursday, February 26, 2009 there will be a fundraiser for Sierra at El Chico's in Waco. If 100 people eat there after 5 pm on that day tell their waitress that they are there for Sierra, she will get 10% of the nights take. Kids 12 and under eat for $0.99!

Our friends from 3 Days Lost will be taking the stage at 7 pm.

Come on out and join us!

Busy, busy

2009-02-14T09:31:00.000-06:00

It is so good to be home from the hospital! Through the whole incident, God reminded us once again how frail life is and how blessed we are to have Sierra. We are so grateful that He decided to let us keep her. She is truly our miracle baby.

Sierra is still a bit weak but she is getting stronger. Her muscles became pretty tight from laying there for two weeks with no movement. Her muscle tone is improving now that she can move again. Poor baby has nasty bruises from the a-line and IVs. I feel like crying everytime I see them :-(.

My MIL came while Sierra was in the hospital and she is going to be here another two weeks. I wish we could just keep her though! :-) She has been a great help. She is helping us declutter and get organized so that keeping the house clean will be easier.

We're Out!

2009-02-10T17:15:00.000-06:00

Praise God!

Getting Closer

2009-02-08T08:26:00.000-06:00

We are getting much closer to going home!

Sierra had a good night. They are gradually weaning her from the medication that was causing the withdrawels.

She is now completely off of oxygen. She still has a feeding tube down her nose, but they are decreasing those feeds as I increase the amount that I give her by bottle.

It is so good to be able to hold her again! We went two weeks without being able to hold her. She is happy about being held too. :-)

Thank you for your continued prayers. We could still use a lot of prayers. There are going to be lots of changes in our lives in the next year or so.

Cold Turkey

2009-02-07T11:47:00.000-06:00

Yesterday, they stopped giving Sierra versed, one of the medications. They didn't wean her from it, but stopped cold turkey. Today (and last night) she was going through withdrawels. So they started giving her a little bit of it again and will wean her from it.

Today's nurse is very good. The night nurse usually gives Sierra a bath, but the bad nurse from the past two nights didn't. I asked today's nurse if we could give her a bath. He let us get her all cleaned up. She is feeling much better now.

What Now?

2009-02-07T08:48:00.001-06:00

Sierra has been miserable since yesterday. She hasn't really slept at all since then. (Neither have I) She is breathing fast and making little groaning whimpering sounds.

My motherly intuition says something is not right. I hate seeing her so miserable. I am worried about my baby.

Please continue to pray for her. Also pray that we have a good night nurse. The nurse that we had for the past two nights has not been the best.

It's Out

2009-02-06T20:18:00.001-06:00

Today the doctors took the ventilator out.

Sierra is doing well breathing on her own but she is pretty miserable. Poor baby is whimpering and complaining. They still have the feeding tube down her nose until she can resume feedings by bottle.

I tried giving her a bottle twice today but she wasn't really interested. They said that her throat is probably sore right now. Hopefully she will start feeling better soon.

Doing Better

2009-02-04T07:50:00.000-06:00

Well, I think I figured out what happened yesterday. Sierra was doing really well yesterday until the evening. In the evening her oxygen saturation levels started dropping.

What happened was that around 4:30pm Sierra's nurse got another patient. The new patient rquired a lot of attention and so Sierra was pretty much neglected until the night nurses came on at 7:30.

Around 6:00 pm Sierra was coughing. I knew that she had to be suctioned. A different nurse came in, and I mentioned it. He would not suction her though because the notes said not to suction her (the notes were for when she was on the other ventilator because she wasn't suppossed to be suctioned while on it.).

Since she needed to be suctioned and was not, her saturation levels were dropping down to 90 and 89 (they are supposed to be above 95 the closer to 100 the better.)

When the night nurses came, I told them what was going on. They suctioned her and gave her TLC and within a few minutes her oxygen saturation levels jumped back up to 98 and have stayed between 98 and 100 since then.

Step forward, step backward....

2009-02-03T18:40:00.000-06:00

Earlier today Sierra was doing really well, but this evening her numbers started dropping a bit. If they do not go back up soon the doctors will have to increase her oxygen levels.

Getting Better

2009-02-03T16:03:00.000-06:00

Things are looking up. Sierra is doing well and they are continuing to wean her from the ventilator and the medications. Lord willing, she may be off of the ventilator by the end of this week.

Thank you so much for all of your prayers!

Update!

2009-02-01T15:16:00.000-06:00

The doctors have been gradually weaning Sierra from the ventilator. This morning the doctor said that this morning's x-ray indicated one of two things. Either the settings on the ventilator needed to be bumped back up or else she was ready to go back on the other ventilator.

The doctor took the ventilator off of Sierra and manually bagged her so that she could feel how her lungs were doing and what steps needed to be taken. After doing that, they put her back on the first ventilator. The next 24-48 hours will be very important. If she doesn't do well she will have to be put back on the ossilating ventilator. If she does well she can stay on this ventilator and then gradually be weaned.

Please pray that she will do well on this ventilator.

Slowly but surely...

2009-02-01T09:14:00.000-06:00

The last few days have been rather uneventful, which is a good thing. The doctors are in the process of very gradually weaning her from the vent. She will likely be on the current vetilator through the end of this week and then be put on the other ventilator.

Thank you for your continued prayers and support.

Today

2009-01-29T21:21:00.000-06:00

Today was another relatively good day in that nothing negative has happened. Sierra is still on the oscillator ventilator and according to the doctors is still not stable. They still are blaming it on a virus although there also seems to be a bacterial infection. This has been a scary trip and I'm grateful for the respite. Hopefully in a few days they'll be able to get her back on a normal ventilator and off the oscillator ventilator.

I'm also grateful for all the support everyone has been giving us in the form of text messages, blog comments, calls and visits. My mom came in from California last night and is helping us with administrative stuff.

Thanks for all the prayers and support!

Jason Fedelem

Best day so far.

2009-01-28T23:55:00.000-06:00

Today was the best day Sierra has had so far. She didn't give us any scares.

They did find a bacteria in her lungs so they put her on another antibiotic to fight it off. They are beginning to very slowly wean her off of the ventilator. They will have to wean her off of the one ventilator, put her on the other ventilator and then wean her off of it as well.

We must have broken a record for the number of visitors we had today. We had about ten visitors not counting family! We enjoyed being able to visit with everyone.

My mother-in-law arrived today so that is a huge blessing! She will be able to help with holding down the fort at home and once Sierra is more stable she can stay with Sierra while I get out for a few hours every once in a while.

A Little Bit Better

2009-01-28T13:21:00.000-06:00

We had a quiet night last night which meant that I got some much needed sleep.

This morning the doctor said that he liked the way things were looking. He warned us though that the next couple of days will have there ups and downs.

The way he explained it was like a pilot flying a plane. If the plane's nose was too high in the air and the pilot tried to correct it but ended up overcorrecting then the nose would be too low. It is all a matter of figuring out exactly what needs to be done in order to get the plane to fly level.

Another Day

2009-01-27T14:10:00.000-06:00

Sierra is still in very critical condition. She is very touchy right now because of all the medications and things they have her on. They were moving her and her heart stopped for a second. It was terrifying.

Renewed Strength & Blessings

2009-01-26T22:37:00.000-06:00

"He gives strength to the weary, and to him who lacks might He increases power...those who wait for the Lord will gain new strength" Isaiah 40:31

I was getting mentally, emotionally, and physically exhausted. This afternoon God gave me renewed energy and an overwhelming sense of peace. I can feel all of your prayers. Thank you for lifting us up before the Lord.

"When the darkness closes in Lord still I will say, 'Blessed be the name of the Lord!'"

Today was one of the most difficult days so far. Right now Sierra is still very critical, but amist the storm there is peace.

Something I have been thinking a lot about lately is how great God's sacrifice was to let His Son go through so much suffering. I have a much better understanding what He went through. It is so comforting that He knows the pain and anguish that we are going through.

I have also been thinking about all the wonderful blessings God has poured out on us. I am going to list just a few.

1. We still have our precious daughter and she had 14 months of excellent health (amazing for a brain injured child!)

2. We are surrounded by the love, prayers, and support of brothers and sisters in Christ (Facebook, Crossings, Grace Waco, KBC, homeschool group, and many people who don't even know us)

3. We have had wonderful doctors and nurses

4. We took Sierra to the doctor as soon as we knew she was sick rather than waiting a while to see if she got better.

5. We have an excellent hospital that people from all over the state and nation come to and it is only 10 minutes from home.

6. We are in a nice big room that has a bathroom and bed.

7. Jason and I both fit on the twin sized bed in our room :-)

8. My parents and siblings are close by.

9. My MIL is flying out to help us during this time. (YAY!)

10. Jason's boss let him take FMLA through Jan 31st.

There are many, many more but I will stop for now. :-)

Thank you all for your prayers. God is bathing us in His grace and giving us enough strength to face one day at a time.

New Ventilator

2009-01-26T20:16:00.000-06:00

They have to put her on the other ventilator afterall.

Letter from Sierra's Uncle

2009-01-26T18:56:00.000-06:00

Dear Ya'll,
she would look at me with blue eyes that don't see. she reaches and holds onto my finger for dear life. She would fuss and then if I waltzed around the room she would relax and calm down. she hates having hick-ups, she is my neise! she's 14months old, but I love her!!

She has been sedated and placed on a ventilator, her parents can only stand by in the ICU and worry at the sudden drops in her heart rate.... the continual strain of Drs and nurses rushing in and out... not knowing, kind of like being the star in a night mere you never wnated to be in and that you can't wake up from.

That is what I can only think of I'm in South coralina . life seems to have passed someone the short case, I don't know how to put it but it hurts. I'm powerless (not the first time) I can only recall the last time I saw her. I bent close to car seat and wispered take care I love you Sierra. I doubt she knew what I said but I knew. I am remembering and praying that as her life once again hangs in the balance of God's love and His hands. I can't tell you why it is all happening but who cares anyway?

May the Lord Continue to shine on you,
Josh

Your Prayers Are Being Heard--Keep Praying!

2009-01-26T18:34:00.000-06:00

Well she is still far from being stable but she is much better than an hour ago. They are holding off just a little bit on putting her on the other ventilator. They want to see if she continues to improve. The doctor said that the next few days will be like a rollercoaster.

God has given me an incredible peace. We know that she is in His hands and that is the BEST place for her! He will be glorified. He has great plans for this precious little one.

New Ventilator

2009-01-26T17:39:00.000-06:00

She is getting put on the new ventilator. Please pray that God's will be done and that He will be glorified. Also pray that He will strengthen us.

Not Going Well

2009-01-26T17:04:00.000-06:00

Things are not going well at all. Sierra's circulation isn't doing well. They are going to give her medicine to make the heart pump stronger to help increase the circulation. This is probably a result of her being put on the vetilator.

Her blood gases are also very high. Pray that they will go down. If they do not go down she will need to be put on a different ventilator.

Pneumonia & Ventilator

2009-01-26T08:47:00.000-06:00

Apparently Sierra has pneumonia in addition to the viral infection. Her lungs are pretty congested. The bipap machine that they had her on was not effective enough. This morning she had some serious drops in her vital statistics. It gave us quite a scare. They got her stabalized again but have decided that it is time to put her on a ventilator.

The doctor is also going to check her heart as well.

Please be praying that the pneumonia would clear up soon and that her breathing would improve. Also pray that God would give us all strength.

URGENT PRAYER REQUESTED!!!

2009-01-26T05:11:00.000-06:00

Sierra' stats started dropping dramatically. PLEASE PRAY FOR HER!!!!!!

Breathing

2009-01-25T11:33:00.000-06:00

One of the biggest prayer requests right now is that Sierra's breathing would settle down. She is breathing really fast. Since she is breahthing so fast she can't have a bottle because she might aspirate the milk and get it into her lungs causing pneumonia. They just put a tube down her nose so that she can start getting milk that way. Once her breathing slows down, she will be able to have a bottle.

The doctors are saying they think she has a viral infection and that it will just have to run its course.

Today's Update

2009-01-24T22:07:00.000-06:00

Well not much has happened since the last update. Sierra has not been put on a ventilator yet so that is a huge praise. We are praying that she won't need it.

She was miserable today. :-( It is hard to see her like that. They stopped giving her one of the strong antibiotics that they were giving her because meningitis has been ruled out.

She is still on the oxygen mask and her breathing is labored. She is on 60% oxygen right now. They are trying to lower it gradually. She has to be able to handle it at 30% and be breathing easier before they can think about taking it off.

They think she might have a viral infection.

She got a blood transfusion today because her blood count was rather low.

We have an AMAZING night nurse! I wish we could clone her. :-) She came in the room and started talking to and caressing Sierra. She said to the resident on staff, "Can we give her some pain medication? She is hurting." (We have been asking that question since yesterday) At first he said no, because he thought she was talking about a sedative. She asked for Tylenol and he said that was fine. THANK YOU!!! Now my poor baby has some relief!!! Next, she changed the bedding (which she discovered was wet because the heating blanket under her had leaked), gave Sierra a sponge bath, put Lavender lotion on her, and put a little dress on her. As I type this, Sierra is sleeping peacefully and her stats are good. What a difference some pain relief and loving care makes!

I will be able to sleep tonight knowing that Sierra is in such good hands.

The prayer requests are pretty much the same as last night. Thanks for your prayers, calls, visits, etc. We are so blessed to be surrounded by the love and support of so many people!

Prayer Request Summary List

2009-01-23T22:30:00.000-06:00

We are sitting here in PICU. At the moment things are okay, but we have learned that things can change quickly. Here is a list of some specific requests.

1. Right now they just have an oxygen mask on her. They are hoping that this will help here and that they will not have to put her on a ventilator. Please pray that tonight goes well and that her stats stay good so that they will not have to ventilate her.

2. Pray that her liver would start working properly.

3. Pray that Sierra (and parents) would get some peaceful and restful sleep.

4. Pray that God would be glorified through all of this.

PICU Friday

2009-01-23T20:11:00.000-06:00

On Thursday they gave her lots of fluids because she was really dehydrated. That perked her up a bit but then she started getting really fussy.

On Friday her lungs started having some problems. It is possible that she aspirated and has the beginnings of pneumonia or they could have given her too much fluid and that could be affecting the lungs.

They put her in PICU so that she could have more oxygen. Please pray that she won't need to be put on a vent. Also keep praying for her liver. Thank you for your prayers.

Admitted Thursday

2009-01-23T20:03:00.001-06:00

We took her to the ER on Thursday and she was admitted to the hospital. They did the spinal tap and ruled out meningitis.

The lab results for her liver were abnormal. They have given her plasma. We are praying that the liver will start doing what it needs to do.

Sick on Wednesday

2009-01-23T20:00:00.001-06:00

On Wednesday, I noticed that Sierra was not herself. She was just sleeping and would not eat. I took her to the doctor and he thought she might just have an ear infection. He gave her a shot of antibiotics.

The next day she still was not doing well. We took her back to the doctor. He had an xray done and checked her urine for a bladder infection (which she did not have). He was worried about meningitis and recommended that we go to the hospital.

Please Pray for Sierra!

2009-01-22T12:05:00.000-06:00

Please be praying for Sierra. She is pretty sick right now. Yesterday she was sleeping all day and didn't want her bottle. We took her to the doctor. He said that it is possible that she had an ear infection. She got a shot of antibiotics. He said to make sure that she gets enough liquids and is wetting her diaper. If she stops doing that, then she will need to go to the hospital. She has another doctor's appointment this afternoon and will get another shot of antibiotics.

Please pray for her!

Family Fun and New Therapy Toys

2009-01-02T18:23:00.000-06:00

Sierra had fun this week. Her Grandpa and Grandma Fedelem came to visit for a week. She enjoyed spending time with them. Our only regret is that they live so far away.

Her Uncle Joshua also came to visit and will be here for a few more weeks.

Sierra also got some new therapy toys. They aren't specifically made for therapy, but they work. :-)

This is a little rubber keyboard that I found at the thrift store. It is very sensitive to the touch so her slightest touches make it play. It is good to help her become more aware of her movement and develop more purposeful movement.
The glowing red thing is a Twilight Ladybug. It lights up in red, blue, and red. I'm not sure if she is able to see the light or not.

And last but not least......

....I am still having a hard time believing this one. Here is the story. My mother is by no means an animal lover. Growing up, we would always have to convince her to let us get another animal. Anyways, she was at my house the day before Christmas. We were chatting about Sierra and she mentioned that it would be good for Sierra to feel movement. She thought of crawling around with Sierra on our backs. Then out of the blue she said, "What she really needs is a little horse." I was so shocked! She said, "You could get her a little horse and he could stay in the pasture with Miracle and Cocoa." (Miracle and Cocoa are my horse and my sister's horse. They live at my parent's house.) After she said that, I jumped on Craigslist and found the ad for this little guy. We called up and made arrangements to go see him on Christmas day. The people selling him had received about 30 e-mails about him, but I was the first to call. We went to see him and bought him. :-) Horse therapy is SOOO good for disabled children. I am going to try to have Sierra ride him at least 2 times a week. My mother named him Praise. I call him, "Lil' Praise Pony."

New Family Member

2008-12-06T13:08:00.001-06:00

It is official, we have a new family member.

Pancho Villa is a little guy that was a stray that we got from the pound.

He loves Sierra.The three Musketeers.

Staying Busy

2008-11-21T10:47:00.001-06:00

I guess I'm overdue for writing an update. We have been so busy lately, I feel like we don't even have time to breathe!

Sierra is getting physical therapy 4 times a month, developmental delay therapy 2 times a month, and blind services 1 time a month. She is also going to the chiropractor in Austin (75 minutes away) two times a week. On top of all that, we have been doing fundraisers. Our next fundraiser will be in Burnet on Dec. 13. That will be a fun one. We are going to have an arts and crafts booth set up and sell wooden things that I made with the scroll saw and also homemade soap.

We went on a 2 day camping trip to Pedernales State park about 2 weeks ago. We took Sierra and the two dogs. We all had fun and really enjoyed it. We hope to go camping again sometime.

Yesterday, Sierra, Daisy, and I went to the swearing in of our state representative. I got to take pictures of Sierra with lots of important people so that was fun. It has been about a year since I have been able to go to any political events so it was nice to be able to do that again. I'm hoping to gradually start becoming involved again.

Here are lots of pictures from our camping trip and our trip to the capitol.

Camping

Swearing in of State Representative Ralph Sheffield

Sierra with State Representative Ralph Sheffield, State Speaker of the House Tom Craddick, Former Rep. Dianne White Delisi, and State Representative Jimmie Don Aycock

Sierra with State Senator Troy Fraser (and Mr. J. Brown)

Sierra with Justice Bob Pemberton (3rd Court of Appeals)

Sierra with U.S. Congressman John Carter
(this one was actually on election night, not at the swearing in)

Sierra with Governor Rick Perry

Accident and Vacation

2008-10-01T20:38:00.000-05:00

I will be adding pictures to this post in a day or two.

Last week was a whirlwind of activity. We were planning on leaving on the 23rd to go to California for a week to visit Jason's parents. On Monday, Sierra and I were out doing some last minute errands when we were rear-ended. It turned out to be a 4 car accident. I won't go into details because the insurance claim is still open. Thank God neither of us were seriously hurt! Our car is in the shop right now, so we are using a rental car.

On Tuesday, we flew to San Francisco. The flight went okay but we had some issues with luggage. Our luggage didn't make it when we did. That wouldn't have been so bad, because they said they would deliver it, but the problem was that our car seat was with the luggage. They said they would lend us one. So they took us over to where they have their loaner items and pulled out an ancient 10 year old car seat that didn't look safe. FWIW, car seats expire after about 5 years. We said that there was no way we were going to put Sierra in it and that they could face major legal problems if they ever loaned that out to someone. Since we wouldn't use their car seat, they told us to wait at the airport for 3 hours till ours arrived. Finally, after asking to speak to a supervisor, they suddenly came up with a solution and found a safe car seat for her to use.

On Wednesday, we drove to Grizzly Flats to visit with some long time friends of Jason's. After a nice visit with them, we drove to Galt, to visit my KIRABO!!!! =) Kirabo is the wolfdog that I owned before Jason and I got married. I gave him to a lady in Galt, because I knew he wouldn't be happy in a house with a small backyard. It was wonderful to see him! After visiting Kirabo, we drove to Salinas.

On Thursday, Sierra got to hang out with Grandma, while Jason and I celebrated a late 2nd anniversary. We went to Monterey and Carmel. It was fun seeing the Sea Lions so close up and in the wild. Carmel is a very picturesque town with beautiful little houses. At Carmel, we ate dinner at a restaurant. We did feel rather out of our league there. Then we walked down to the ocean. We enjoyed our day very much.

On Friday morning we visited the couple that fostered Jason from 3 days old until 6 months old. This was the first time in about 21 years that Jason had seen them, so it was really neat for all of us. Friday evening we visited with some other friends.

On Saturday we went to the airshow. Sierra hated wearing the ear protection that we bought for her. She looked very cute though! She got her picture taken with one of the best aerobatics pilot in the world, Sean Tucker. I'll add the picture soon.

On Sunday, we went to church and then had a meet and greet after we got back.

On Monday morning, we went to visit some of Jason's other friends. That afternoon we took a ride in FIL's 65 mustang and then had pizza and watched movies. (Well, I fell asleep during the second movie! Opps! )

Overall, we had a good time and enjoyed seeing Jason's parents and friends. Sierra enjoyed it, except for traveling. She didn't like being held for that long and wanted to be on the floor doing her army crawl.

HAPPY BIRTHDAY SIERRA!

2008-09-19T16:25:00.000-05:00

Today is Sierra's 1st birthday. We went to the chiropractor today and Sierra did really well. They were so sweet and had a piece of cheesecake for her. She had a few bites of it and really liked it. :) We really didn't celebrate today. We are going to celebrate on Sunday. We'll have a little "Praise Party" for her. (If anyone wants to come, let me know!)

It is hard to believe that a year has gone by, but on the other hand, it seems like the day she was born was so long ago. I had been dreading her first birthday for a long time, because of the nightmare of memories that it holds. However, today was good. (Two days ago,the anniversary of the day that I went into labor, was rough emotionally.) Today I was just bursting with indescribable joy and so thankful for the precious blessing that God has allowed us to have!

Here is a picture from today.

Padre Island

2008-09-13T14:44:00.000-05:00

When we went to visit my grandmother we decided to go to South Padre Island since we were already at the tip of Texas. It was Sierra's first time to go to the beach and Jason's first time on a Texas beach (he is used to Florida and California). We really enjoyed it and are talking about going more often.

Please Pray for Sierra's Great Grandmother

2008-09-04T00:05:00.000-05:00

Please pray for my grandmother (Sierra's great grandmother). She is going to be having triple bypass surgery starting at 7:30 am (Sept. 4) because she has 80% blockage. It should last 4-5 hours. We made a quick weekend trip to see her.

Benefit

2008-08-23T20:09:00.000-05:00

The benefit today was a huge success thanks to the Elks Lodge, Kay's Motorcycle Mania, Wind & Fire, and all the other many people who made it possible and came out to support Sierra. They raise $5,336 for Sierra!

Rant

2008-08-20T16:18:00.001-05:00

Last month Medicaid ran out for Sierra and we were denied renewal due to income. We had to pay for her Keppra (seizure medication) out of pocket. At Wal-Mart it came out to $57. We have a prescription card through insurance for Walgreens, but we were in a hurry and didn't have the time to transfer it. Yesterday I decided to go ahead and deal with having it transferred to Walgreens. I asked them how much it would be, but they said they didn't know. Today I went to pick it up, and the lady said that it was $69.69.

That is CRAZY!!!! Why does everyone have to hike up the price if you are using insurance!!! I said, "You have got to be kidding me! Am I required to buy it?" She said no, so I said that I wasn't going to. (I'm sure they weren't happy with me but seriously they should have told me the price yesterday and then it would have saved both of us time.) So then I had to call up Wal-Mart and get the prescription transferred back to them. What a pain. It's a good thing she is not on a lot of medicines...they are expensive!

Now if we could only get MDCP with Rider 28. I'm not sure if it is based on severity though....don't know if she would qualify for Rider 28.

Miscellaneous

2008-08-19T19:39:00.000-05:00

EEG Results

Today the neurologist called with the results of Sierra's EEG. The bad news is that one side of her brain is having some spikes. The brains cells are irritated, so he wants to keep her on Keppra for now. He said that we will re-evaluate in 4-6 months. The good news is that she has not had any seizures for over 9 months now and the neurologist is going to keep her at her current dose of Keppra rather than increasing it. (We are SO much happier with this neurologist!)

Chiropractor Visits

We can't believe how much the chiropractor visits have helped Sierra! The lump that she had on her back from scoliosis has gone down immensely. We have also been working on patterning with her. We move her opposite arms and legs up and down in a crawling motion. Since her last adjustment on Monday Sierra has been pulling her knees up under her quite a bit and lifting herself up into a crawling (technically it is called creeping) position. Sierra's body temperature tends to run low. Whenever we would touch her, she felt cold to the touch even if it was a hot day. Since going to the chiropractor her body temperature seems to have improved. Now when I touch her, she feels nice and warm not cold. She has been rather vocal lately as well.

ECI

Sierra will be evaluated by ECI next month. Then she will begin receiving therapy.

Elks Lodge Benefit

The Elks Lodge Benefit for Sierra is this Saturday from 11:00-5:00. There will be BBQ plates for $5. All the food was donated! They have been so generous! The auction starts at 2:30. Some really great items have been donated. There is beautiful antique furniture, rustic furniture, a 5 night vacation to Colorado, and lots of other great things. People have been so supportive! We are overwhelmed with how kind everyone has been! Oh yeah, there will also be Karaoke music, that should be fun.

Newspaper Interview

We wrote up an ad for the benefit to put in the local paper. We submitted it to the section for garage sales. The newspaper people called up and told us that they could not put it in that section (they put it in the appropriate section). They said that they wanted to do a story on the benefit and on us! We will be going in for an interview on Thursday.

Pictures

2008-08-08T17:17:00.000-05:00

Here is a picture of Sierra's first time in the pool. It was at the hotel in San Antonio last month. Somehow I managed to lose her swimsuit so that is why she is wearing a onesie.

We had another chiropractor appointment in Austin today.