Beauty

So, I still can't find my camera. However, check out these beautiful photos of the older girls taken by Haley B. She is a whiz behind her camera:)

This is just a "sneak peak" of the shoot. I can't wait to see them all!

Enjoy and Be Blessed!
Joy

Save Me

I have been waiting to post because I wanted to include a picture, but I can't find my camera anywhere...Please pray that I find it soon. There are some precious pictures on it (not just cute precious, but sentimental precious). So, for now, just words with no pics.

I was driving this morning and singing a favorite song with the girls..."Savior, He can move our mountains. Our God is mighty to save, He is mighty to save..."

I have loved that song through this storm and have sung it so many nights holding Rebecca that she can sing it too now. I usually think about the words as I sing. Today it hit me in a different way. Don't you love it when something so familiar is all of a sudden in new light?

SAVIOR - that word hit me this morning. It made me think about what it would look like ON EARTH to have someone come in and rescue you from the most troubling situation. From the simple, such as needing someone to rescue you from being stranded with a flat tire, to the more complex things that life can bring...we all need a little earthly saving now and then.

It made me think about a baby...given up by his parents for adoption, or left on the doorstep of an orphanage overseas. This infant, then baby, then toddler who, until they find their forever home, will spend nights alone or in temporary care. Then, one day, a couple walks in and love abounds. This child now has a table to sit around for dinner EVERY NIGHT. Faces of parents and siblings who adore them...just for who they are. Traditions, birthday parties, and family. These families SAVED this baby from an uncertain, probably an unfortunate, life that could have been.

I don't think there is a human alive, child or adult, who wouldn't admit to needing a little earthly help now and then. Sometimes it is Riley calling out to me to "SAVE" her from impending doom when she gets stuck hanging too far out on the monkey bars. Sometimes it is me calling Tom and asking him to "SAVE" me by taking over when he gets home from work. Right now, the biggest "SAVING" we could use here on earth would be for a doctor to walk into a room and say "we have this figured out. It is treatable, not fatal like we thought. It does not include your other children on any level. We can SAVE Rebecca with this one simple thing."

It is not likely this will happen. We have been told that what Rebecca more than likely has can easily take her life. In addition, there is a good chance that it will be a similar situation for our other kids at some point. This is proably the worst news we can know. As I keep saying, "it can only get better from here."

While an earthly "SAVING" is something we continue to pray for, it makes me appreciate our SAVIOR even more. Imagine the worst possible situation you can be in (I just described ours). Now think of that being worse by, oh I don't know, a MILLION times. That is what we have been saved from ultimately. I can't fathom that kind of saving. I know it is more than we deserve...that it is by grace and that is a whole different subject:)

SAVIOR...every day, every minute. He has our back. He loves us that much. So much that it is infinately better, what He did, than a child being saved by adoption or than you being saved from your worst nightmare, even better than a doctor saving our family right now. Can you imagine??

Be Blessed!
Joy

Update

We were in Houston early this week for our follow up appointments with Rebecca's doctors. Tom and I went with all three girls. The twins have really gotten stressed out when we have had to leave them in the past, so we decided to take everyone this time. It was funny to see how excited they were to be going with us...so glad we took them!

We spent 10 hours at the doctor's offices the first day, and a good 6 the next. We were exhausted when we finished, but glad we went. Here's the update.

-the final results of the muscle biopsy were not in yet
-preliminary results show that the number, shape, alignment, and distribution of the mitochondria are all abnormal (not surpising, but not diagnostic either)
-she needs glasses (we probably won't let her pick aqua star shaped ones like in the picture, but be assured they will be CUTE!)
-her vision was checked a year ago and was fine, now she can see about 12 feet in front of her
-she needs to stay on oxygen for now
-we sent out 10 vials of blood for more testing while we wait for the rest of the biopsy report
-we will return for a hospital stay after the holidays to do a conjunctival biopsy (eye biopsy)
-at that time we will also do a repeat spinal tap and brain MRI
-the first spinal tap showed abnormal levels of neurotransmitters so they are going to see if that has changed
-the first and second brain MRIs showed concerning findings, so they want to repeat and see what is going on now

We were able to sneak in an hour at the zoo and a walk through Hermann Park while in Houston. Other than that we spent lots of time trying to entertain the troops and waiting. We are glad to be home and thankful for all of you checking on us and praying for us.

Be Blessed!
Joy

France

About once a year, we do a workup on Reagan to test for toxins (mercury, other metals, markers of inflammation, etc). The reason we do this is that kids with autism have a really hard time with detoxifying their systems. We don't know the reason for this, but it is the case. She can be exposed to the same small environmental things as the rest of this family and we will clear them, she will not. So, we test the levels regularly to make sure they are not at a dangerous level and to see if we need to treat them.

One of the tests is a urine collection that is shipped to a lab in France for testing. She has never paid attention to this process before, but this year she was highly interested in why we were doing this. I let her and Riley help with the preparation, packaging, and stamping the letter. I explained to them that the doctors needed to look at it to see if Reagan is healthy. So far, so good. I then told them that we would mail it to France. Reagan thought for a minute, looked at me and said, "Mommy, I think France will be so, so, so, surprised!!!"

Funny girl, makes me laugh all the time!

Be Blessed!
Joy

When You Wish Upon A....Potato???

These pictures are a little old, but they do show how goofy we are around here most of the time. The first one is of Reagan helping Rebecca to put on EVERYONE'S swimsuit this summer. She got left behind with a babysitter one time when I took the twins swimming, so from then on if she even heard the word she would run to the closet and put on all the suits. Kind of her way of saying...."you will NEVER leave me behind again!!" The second is of her and Riley dancing and dressing up. Riley's attire is all her own. Rebecca required some help to get that sparkly cheerleader uniform on over her feeding backpack, but we did it:)

Recently, we got word that Rebecca had been approved for a wish by the Make A Wish foundation. The process has been interesting so far, as I never even thought about how all of it worked. I got a call from our "wish granters" and they set up a time to come meet with us. It was important that the whole family be here, so we set a dinner time appointment. I told the girls that we had some wish granters coming over, but didn't give much more explination than that.

It was funny to see how well the girls "got it" when they arrived. The ladies brought pizza and toys for each girl, so it was like a party from the start. As we filled out paperwork, they talked to the girls about their wishes. The four year olds had no trouble coming up with a list. Reagan settled on wishing for ice cream (so sweet!), and Riley wished for Cinderella. When we asked Rebecca, she just kept saying "pink".

We decided to ask the twins what they thought Rebecca would want (since it was her wish that would be granted). After lots of thought and discussion, Riley asked them to bring her a cow...a real one. Mommy quickly asked them to please not bring a real cow to our house:) Reagan procaimed that she felt Rebecca would love a potato. I asked if she meant a potato head toy, and she quickly informed me that she meant a, "REAL potato...because they are so nutritious." HA! I then had to ask that we not have a potato as a wish either. Talk about Scrooge...I was just asking for things we DIDN'T want them to do:)

We settled on a couple of options and when we get the final word I will pass on what it is. This is a wonderful organization that brings a little fun and light to some hard times. I love that they include the siblings just as much as the sick child and recognize the toll it takes on the whole family.

Until next time....eat your potatos...they are so NUTRITIOUS!

Be Blessed!

Joy

Pictures and Updates

Okay, so I get it...there are lots of you praying for us and you all need a little update now and then to let you know how things are going. Sorry for the long pause...we just needed a minute to breathe:)

Here are the updates on each darling girl...



RILEY - This sweet girl is in Pre-K now and loving it. She still loves all things girlie and sparkly. Riley and I have been getting some one-on-one time two mornings a week and I am loving that. She will be a princess for Halloween, loves ballet, and asked me this morning if Santa may bring her some make-up since Mommy won't get her any. So, in case you were wondering, Riley has not turned tomboy on us yet:) She told me today that "God has the WHOLE world in His hand. People just have bones in their hands." Love that girl!



REAGAN - Well, she obviously got a super sassy haircut for back to school. This little redhead rocked a mullet for so long, that a bob is no problem:) She is loving her time at the Discovery School and has some new friends there now (4 total in their class!). She has also been trying one day a week at Riley's school (in a different class than Riley), and is doing great with that as well. I am so proud of this girl. She has worked hard in her early years (when you shouldn't have to WORK at anything), and it is paying off. Reagan loves all things to do with animals and even found a pet earthworm that is living in a bowl on our kitchen counter. She is so thrilled that it is finally October. She has been waiting for this since last November:) You see, the pumpkin farm is only open in October. This girl loves that place and is happy to get to go as much as possible:)



REBECCA - Rebecca had another muscle biopsy done at the end of last month. We will know more in November as to those results. In the meantime, she has had home nursing start with her, and we have also stopped that. Mommy just could never get okay with all of it:) She also started preschool!! She goes for a couple of hours twice a week. She loves it and we are loving that she gets to do something so "normal". The first couple of days she was scared for me to leave her and actually said, "no school, I want to go to the doctor!". She seems to finally be getting the idea that school is way better than any medical trip! She has had a special stroller (wheelchair) ordered that can hold her oxygen tank. She told the man who was here to order it that she wanted "pink". Unfortunately, it doesn't come in pink, but that gives you an idea of how sassy this girl is becoming:)

I plan to try to update more often. Thanks for all of the encouraging words and for helping me realize how important it is to document all of this...good and bad, so that people can continue to pray.

Be Blessed!
Joy

Percentages

This is too important to ignore. I am coming back online...and on a soapbox for just a moment. This is a picture of Reagan a few weeks after she was born. She was still in the NICU and therefore we had many things on our list of worries...will she go home with Riley, will she eat on her own soon, will she have any of the problems premies can have, etc. The thing I didn't even KNOW to worry about was this...will she have autism? Of course, that should not be any mother's first thought or concern. HOWEVER, the CDC (the same one who has been VERY cautious in acknowledging most things related to autism) agreed with a report listed this week. You ready??

ONE IN 100 KIDS BORN TODAY WILL HAVE AUTISM. ONE IN 58 BOYS WILL HAVE IT.

What the heck is going on? Not only are these numbers real, the very agency who has turned a blind eye in many instances is standing up and agreeing with this. Are we to the point yet where a mom will have to worry about it from when the pregnancy test is positive until the age of three when they are "in the clear"? Will "it's a boy" bring joy (as it should), or terror? I don't know the answers, just wanted to help spread the awareness.

So, for the REAL reason you all logged in. Even though I said I was done (for now). I wanted to share that we are doing well. Rebecca is doing great in this milder weather and has even be able to go out wihtout her oxygen most days. She has been granted a wish through the fabulous Make-A-Wish Foundation, and I'll post more details when we have them. Reagan and Riley are growing too fast, learning everything they hear, and trying to figure out how to use new big words they are learning. Tom and I are on cruise control and enjoying this little lul in the storm. We return to Houston for several appointments in November...hopefully for some answers, but we understand that those don't come around often.

Until next time...
Be Blessed!
Joy