Thursday, May 29, 2008

Pictures

Just wanted to post some photos that I took of her today. She is wearing a cute little outfit that "Aunt" Amanda gave her. Thanks Amanda! Sierra's hair is starting to get adorable little curls in it. I think her hair is going to be wavy like mine.




Tuesday, May 27, 2008

Roll Over Red Rover

Today Sierra did something new. While she was having tummy time on the floor, she rolled from her tummy to her back. She has rolled from her back to her tummy before, but this was the first time for her to roll onto her back.

She also seems to be having more leg movements. When she is on her back, she is lifting her legs a lot higher up than before.

We have been in contact with the doctor who is the medical consultant for Stem Cells China. She is going to be sending us more information. I am really getting excited about this. There have been people who could not walk who had the stem cell treatments and then were able to walk. As far as Sierra's eyesight, I think it might help the optic nerves, but I think she probably has CVI (cortical vision impairment) in addition to optic nerve damage. However, we have heard of several programs that have helped children with CVI gain sight. My main concern is for her optic nerves.

Something interesting that I learned is that the improvements from stem cell treatments are not visible on an MRI, or at least not right away. Here is a quote from Krishner, who is a medical consultant for Stem Cells China.

Typically on brain injured kids MRI’s are not done. Getting an MRI on a special needs child usually means sedating them so that they will lie still in the machine and thus the treating facility will not do this unless the MRI is absolutely needed. It also is the case that patients are only in China for a few weeks which is not long enough to see any changes that might occur. This type of growth would need to be very substantial in order to be picked up on a scan and that type of growth takes years. You also should remember that the cells are not creating a lot of new grey matter which is what makes up the bulk of your brain but rather they target white matter. White matter is laid down within the existing grey matter creating new Neuro pathways. The cells thus activate parts of the brain already there but may be stunned and/or dormant.

Having said that I will now tell you that there are a couple of kids who started SCT (stem cell treatments) when they were very young and have gone back for more treatments thus the doctors were able to obtain both pre and post treatment MRI’s over a longer time span. The MRI’s on these little’s ones did show increased brain mass....

...
The requirements for the Optic cases are very different and I do gather a pre treatment MRI. We have only just begun to treat these cases within the last 10 months thus not enough time has passed to expect that we might see a change on the MRI. I would say perhaps two years post treatment they might be a visible change on the MRI.

Friday, May 23, 2008

Sight for the Blind?

Matthew 15:31
So the crowd marveled as they saw the mute speaking, the crippled restored, and the lame walking, and the blind seeing; and they glorified the God of Israel.


We have begun doing research on stem cell treatment for repairing the optic nerves. What we have been learning is so exciting!!! China is currently doing this using umbilical cord blood (NOT aborted babies). They have around an 85% success rate right now and it is increasing. We are still in the initial process of our research, but we are hoping and praying that this is something that we could take Sierra to get. We would appreciate your prayers. This would be a huge step that has the potential of having miraculous results.

Here are some videos about one boy who had the procedure done.

Part 1
Part 2

Thursday, May 15, 2008

Laughter is NOT the best medicine....

....Sierra is! My grandmother was sick last week. Her blood pressure was high. On Sunday, my mother, Sierra, and I took an unexpected trip to visit her. When we arrived she was just laying in bed. She was thrilled and surprised to see Sierra! After we got there, she started doing so much better. She was holding, talking, and singing to the baby. Lil' Bit was the best medicine for her.

Prayers
I am continually amazed at how many people are praying for Sierra. I will be out shopping or something and I will run into people who ask about her and say they are praying for her. Some of these people I meet I barely know! Then there are many others who I have never met or even heard of who are praying for her. It is so heartwarming to know that so many people love her and faithfully pray for her. God is using all of your prayers. He is working so many miracles in her life. We are so blessed to have her. She is truly a priceless treasure.

Stubborn
Well, Sierra got a double dose of stubbornness and it is becoming quite evident. Now that she is eating from a regular bottle, we thought it would be good if Jason and my mother started feeding her also. Before, I was the one who would always feed her since I knew how to operate the special bottle. They have tried several times to feed her, but the little squirt takes a few sucks and then refuses to eat unless Mama feeds her.

March of Dimes
On Saturday we participated in the March of Dimes walk. It was a three mile walk. Jason's work, Sprint, had a team. We took the dogs and the baby. They gave her a shirt that says, "NICU Graduate."

Wednesday, May 7, 2008

No OT?

Sierra has been having occupational therapy once a week. Medicaid only pays for the first 6 months that they are out of the hospital. Her 6 months ran out. Now that she is covered by our insurance we figured we could just get them to cover the OT. Unfortunately it isn't that easy. Jason made a bunch of calls trying to figure out what we needed to do to get our insurance to cover it. No one seems to know. We may just try taking her to an OT appointment and then submitting it to insurance to see if they will cover it. Our OT is working on trying to get Medicaid to approve more months.

We could always get OT from Early Childhood Intervention, but we like Sierra's current therapist. Her therapist has been working with her since she was about a week or two old and we know that she really loves Sierra.

Y'all can be praying that everything works out so that we can continue with our current occupational therapist.

Saturday, May 3, 2008

Little Stinker


I have been meaning to post an update for a week now.

Sierra is really starting to show more personality. She is getting an attitude. Recently she has begun throwing little temper tantrums. She throws her arms forward and complains. Although this is behavior that is going to need correcting, it is WONDERFUL to see! It is so good to see her expressing herself in more ways!

We have begun giving Sierra some solids. I started her out on a jar of baby food that was rice cereal mixed with applesauce. It took her a little while to get used to the taste but she seems to like it. She slurps it down. Avocado is supposed to be really good for babies, so I decided to give her some. I mashed it up and mixed it with milk. The first time I gave it to her, she took a spoonful, made a face, and promptly went to "sleep." I continued to try stuffing it in her mouth which was a messy job! She didn't open her eyes once. Then I put her bottle in her mouth. Her eyes popped wide open and she stayed wide awake while she drank the entire bottle. At first, I was wondering if it was a coincidence or not, but she did the exact same thing every time that I tried giving it to her. One time I was playing around and would switch back and forth between the avocado and the bottle. Avocado in...time to fall asleep; bottle in...time to wake up! She's got this playing possum down to a T.

Sierra's OT (occupational therapist) says that she cannot believe how much Sierra has improved after HBOT (hyperbaric oxygen therapy). She says that she would love to see an MRI to see if it shows any thing different since HBOT. Her OT says that Sierra has already surpassed what the doctors thought she would do.

Sierra is beginning to push her chest off of the ground and pull her knees up under her. It seems like she is starting to take a few steps toward creeping (crawling on her hands and knees.) Of course she is very delayed, but we are hoping, praying, and believing that she will walk someday, contrary to what the doctors say.

BTW, I just have to say that our dogs absolutely adore Sierra. I call Bucky her buddy and Shylah her guardian angel. We usually put a blanket on the floor in the living room and let Sierra lay on it. The other day, my mother was here. She picked Sierra up and put her in the bouncy seat but left the blanket on the floor. Shylah came in the room later and walked up to the blanket. She sniffed it and started whining because she didn't know where the baby was. Finally she found the baby and was happy. =)