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.

A Long Overdue Update

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

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

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

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

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

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.