Continuing Her Legacy

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

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

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

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!

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!

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

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

Rolling, Rolling Rolling & First Speech Therapy

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

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.