Would you like a sneak peek?

There is nothing like being blog illiterate, but it seems I am once again struggling to figure out how to get pics in the right places on this page!!! I wanted to post some pics of the progress on the house, but they didn't line up like I thought they would, so I'll just go through the ones that posted like they are, so here goes :)
The picture to the right is of Dave's and my bedroom. It is painted with really warm contrasting browns. We're doing all of the trim in white. I was really unsure of the colors. My sister Jennifer helped me pick them out and if the truth be told, she did a great job (but DON'T TELL HER!)


This is the room that the kids will share to begin with. Addison is a little scared to be in a room by herself, so Aaron and Aiden will share with her for a while. Aiden will always be in a room with one of the other kids, so for right now it will be Addison. In a couple of years (probably less time than I would like to imagine) we will move Aiden in with Aaron because Addison will need girl space. (I hope the Lord gives me a few years to prepare!)


These are of the downstairs bathroom. It has been renovated to accommodate Aiden; a bath with hand rails, a new toilet, no tile, a detachable shower head. We will have clothing and other things for his use here to make it as easy as possible. I really like the tile accent. I think it looks pretty!

This pic is especially for my mom. The new counter tops were installed yesterday and she wanted to see them right away!! Here they are Mom, aren't they beeeuuteeful? Last night after they were finished putting them in I got out the mop, cleaned the floor and stared. I know that sounds silly, but I wanted to see how pretty the kitchen would look when it was finally done. (We do have a slight technical difficulty that will take some fixing...sloping cabinets :( )

Hope that this finds all of you well. We are actively working to finish this project with a hope to getting moved sometime in March. Pray to this end for us if you can, please!!

Blessings to all,

Christa

The twists and turns often surprise me

Isn't it amazing the way our lives take twists and turns?? This last week has been totally strange and unexpected. Here in Virginia we have a new governor. As all politicians must do, Governor McDonnell has been given the unenviable job of balancing the budget for our state; a budget which dare I say is horrendously out of control. In seeking to make the changes that are required to make the state finances more equitable, he decided to make some cuts to Medicaid waivers. For those of you who are unaware (and to be honest, I was unaware just over a year ago) these waivers provide opportunities for individuals with disabilities to have care provided in their own communities; allows them freedom, independence and support. As well, for families with disabled children the waivers provide assistive care (attendants) in the home. For us this has given me the chance to spend more time with my older kids, my husband, and take some personal time. It is also providing Aiden with a special helper; someone who works with us in reaching Aiden's goals in speech, physical and occupational therapies.

The proposition was to remove what is called the "consumer directed option" from the waiver provided services. For us this would mean that we would no longer have the choice of attendants; we would have to accept any person who was sent to us by an agency. We would not be able to interview the attendant; not be able to asked questions concerning the person's background; not be able to fire the attendant if the fit was not right (or if heaven forbid something terrible were to happen). I am not willing to give up that much power to anyone; especially a stranger and especially with my littlest baby. This cut would effect not only children with disabilities, but also disabled adults and elderly.

So how have Governor McDonnell's proposed budget cuts caused twists and turns in my life's road? Well, as you can imagine I was a little shocked and lots concerned. I appreciate the help that we receive. I have seen improvements in not only Aiden, but in my older kids as well. I knew that they were in need of my time, but I have had so little to give them until the waiver gave us help. I was also angry....Why should the people who have so little be responsible for carrying so much of the burden? So when I was asked to contact some people about the cuts I jumped in with both feet.

Let me start by saying that I have never seen myself as a crusader. Although I chose a career in a field with children who usually lacked care or who were shuffled around because they were unwanted, I did not see my advocating for them as a crusade. I also thought that I understood the importance of the parent advocate. Now I truly understand; if I don't stand up for Aiden and those like him; if I don't encourage others to do the same; if I do not try to change the system so that things are better than I have no one to blame but myself. Conversely, my children would have no one else to blame but me.

So I made call after call, forwarded every email I received, printed multiple letters to as many politicians as I could. How did it turn out? Yesterday we heard that the Senate and House here in Virginia decided to remove the consumer directed options from the chopping block....for now. The actual budget in it's final form will not be looked at until the end of April so I will continue to work towards better treatment, better care, better options for children with disabilities.

I had no idea that some day I would be called on to "rally the troops" (small though they be), or that I would be interviewed by television reporters as if I was someone with a worthwhile opinion. On some level, I believe that I had something to do with the decision to leave funding in the budget for these services. Could it be that this is a new path for me; that I might be in the right place at the right time? Maybe it is just that I want to feel that I am destined for greatness; or maybe I just need to think that something not just good, but great will come from the struggles that we've encountered with Aiden, or maybe I just want to feel like the dreams that I had for Aiden won't go to waste. Maybe it is all of the options. I will wait and see. I hope that you will wait with me.

I will keep you posted as to how this works out, and if you can be helpful by contacting your delegates. As well, I cherish your prayers.

Blessings to you all,
Christa
To see Aiden's interview go to
www.whsv.com/video/?autoStart=true&topVideoCatNo=default&clipld=4560206&flvUri=&partnerclipid

(Ok, so if that doesn't work you can go to whsv.com. When the home page comes up go to the video search engine and type in medicaid waiver. The search engine should give you several options. The picture w/a little boy wearing a blue pullover is Aiden. ) :)

A move date is on the horizon!

Hi Friends.
I am so sorry that I have not checked in for such a long time. It has been a crazy several weeks. After closing in mid December, all of our family contracted what we think was H1N1; followed by concurrent strep throat (Addison), sinus infection (Aaron and Aiden) and pneumonia (Dave). This was topped off with a Christmas Eve/Christmas morning visit to the ER with Aiden for a possible concussion. (Fortunately, a false alarm.) Thus bringing us to our Christmas holiday. (And I say that with a note of sarcasm in my voice!!:)

Our contractor has been juggling our renovations and at least one other job over the last several weeks. Needless to say, this has pushed our move date back several weeks. We were hoping for a move some time mid to late January. The most recent snow storm has helped us significantly. Because of the snow, our contractor has more time for indoor work (exactly what we need) so we may see a completion of the project within the week. We will now be expecting a move date for the end of February!! YEAH!!

I will do my best to keep you all posted. Take care and blessings to all.
~Christa

We're moving up!!

Hi friends! It has been so long since I've let anyone know how we are doing. I am hopeful that after the first of the year I will be better able to keep up better than I have. I suppose hope springs eternal so we will see how I do. This quick post is to share some photos that I took yesterday...of the house that we are planning to purchase in mid December. (Yeah!!!)

For the last 15 years we have been blessed to live in a little craftsman type cottage. When we first moved in the 1100 square feet seemed just perfect. It held our kitty cat and our dog and our stuff with no problem. After Aaron was born it still seemed just right for us. And after I left my teaching job to stay at home it was a blessing to have a house payment that we could easily handle on one income. Add in Addison and then four years later Aiden and all of the equipment that goes along with a child with a disability (oh and somewhere in there we got a 2nd dog), and you have a rather crowded 1100 square feet. (Actually, this is a significant understatement :) )

Three years ago we began looking earnestly for a new home. It has been an up and down search taking us through several contracts (that were not fulfilled), long nights staring at the Remax website, and many visits to houses that were not for us. I am so glad that this process may finally be over. We have waited on the Lord to direct us and feel that this is the house. Yesterday our hopes were confirmed by our home inspection. Our friend and contractor, John, went through the house with us and said that he would not be afraid to move in to this house!! So we are preparing to move!

I took pictures yesterday and would love to share them with you. I have included pictures of the house from the road, the livingroom, the kitchen, the upstairs hall ), and the view from the porch. We will look forward to having visitors after the first of the year!

Blessings to you all,

Christa

It's been a long, long time....

Dear Friends,

I don't even really suppose that there are any of you still checking; it's been so long since I blogged, but I find that maybe I have some new interesting news! So here goes with our latest.

Over the last six or seven months I have really felt called to create a group for moms with children with disabilities. As some of you may know I have attended a moms' group in Richmond, and found some great support, information, and friendship. I spent time praying about the possibilities; I sought wise counsel from people who know me and who I trust, and I waited. Right before we left for our family vacation the beginning of September Bethann (our PT) and I decided that the time was right. That having been said, Valley Moms was born!!!

As a result of 12 fliers placed around Staunton and Augusta county and a couple of friends spreading the word, six moms and one dad made their way to Ciro's in Verona for the inaugural meeting of Valley Moms!!! (I was thrilled that anyone showed up at all.) We ate Italian and sat around and chatted. It was great to be able to share information and make new friends. We will meet the 3rd Thursday of each month (with exceptions for holidays). Our meetings will be informal for this part of the year. It is our hope that in the spring we will be able to provide some more informational type meetings. If you know any moms who are caring for special kids and may need an hour or two of pizza and soda send her our way!!!

A quick update from our home...Dave is maintaining things at the golf course. He is looking forward (as he always does this time of the year) to the possibility of snow (and lots of it he would say). Addison, Aaron and I have finally started at the ACE co-op. They are each taking some classes and I am co-teaching an art history and techniques class to 2nd/3rd graders. I am looking forward to the kids making many new friends and I am enjoying being a teacher again. Speaking of teaching, I completed both of my graduated classes and am awaiting my renewed teaching license. Finally, Aiden is doing well. What is well, you may ask? He is continuing to walk well unassisted. Things that I thought that he would never do (squat to stand, tricycling, walking at the park in the mulch, etc) he is doing. Stairs are still a challenge. Going up is improving much faster than going down, but at least we have the chance to practice. We are still looking for some really good reliable regular attendant care so if you know anyone let me know:). I am truly blessed.

Please pray that we will find really good people to work with Aiden. It is difficult to find someone to trust with your child. Also, pray that we will see changes in Aiden's ability to speak. We are trusting the Lord with this daily. Finally, Shann0n and her family have had some very serious challenges recently. Please pray that they would have wisdom and peace in the midst of difficulty.

Blessings to you all.
Christa

A week-end to remember

Like I've said before, I have trouble with the picture part of this blogging thing. So these pictures chronicle a small part of our week-end adventure.

Mom, the kids, 2 cousins and I headed out Saturday afternoon to the Louis Ginter Botanical Gardens. It was a beautiful day; perfect for being outside in a garden. Besides, they have a live butterfly exhibit that is really cool. (Thus the picture of the butterfly above.)

We walked, saw butterflies and in the children's garden we got wet! Aiden has never been in a water park or in a sprinkler for that matter. It has really only been just a year that he has tolerated being in a bath tub, so this

was an experiment for us. To my joy and surprise, Aiden really liked the water. He stood with me and got his hands wet. He let Aaron help him while the sprinklers got him. He even laughed and when I put him back in the stroller, he chose to get up and get wet again! It was a fun and peaceful day.

Unfortunately, it ended with Aiden sick. It would be lovely to say that the picture of him sleeping was the result of being tired at the end of a special day. Actually, it is a picture of Aiden Sunday asleep on the floor in the living room with a fever of 101-102. This is also after the vomiting and being awake off and on all night.

We missed Monday's therapy, but that worked out well because Addison started with the virus on


Sunday night. Both of them ran fevers on Monday
(Addison's up to 103.5). I took Addison to the emergency care center Tuesday to have a culture done. It turns out Aiden was exposed to rotavirus; hand,foot and mouth disease; and strep throat!!! I decided that if Addison had strep then I would have Aiden done; otherwise I would save him the trauma (and myself honestly) of a throat culture. The quick strep was negative. We're waiting on the culture. At this point I think that the virus is totally unrelated to our exposures!

We missed a total of 2 days; yesterday was our first day back in therapy. Aiden was a little weaker than usual, but he worked hard. Today was even better. He is showing signs of really improving in his upper body strength. I am excited to see the results even this early.

Please pray that Aiden remains healthy and hardy for the remainder of our stay. Also pray that I am healthy. As self-important as it sounds, we really can't afford for me to be sick. Finally, thank the Lord for His faithfulness in this adventure!!!

Blessings to all,
Christa
PS. As I was writing my mom took my dad's temp.....101!!! :( Pray for him!

I have pics!

Greetings from Richmond. I hope that this finds all of you well and enjoying the beautiful weather. We are doing our best to get our week started. But more about that later.

I have finally gotten a card reader so that I can share some of the pictures of Aiden's first week back in intensive. Aiden started off with a bang. He showed off for Shannon; standing up and walking independently. His evaluation went well and Shannon has set some rather exciting goals for this session:

1. Aiden will pedal his tricycle independently with assistance
steering.
2. Aiden will pay attention to his surroundings so that he can safely navigate up and down obstacles of up to 2 inches.(I think that this is how it should read!!)
3. Aiden will walk up 4 stairs independently with close guarding.
4. Aiden will walk independently over uneven surfaces (grass, playground,etc) for 3 minutes.

For many of you these may seem rather simple goals. For us, they will be miracles of the most precious kind. As well, for Aiden to reach them he will have to work hard and long. It will require much focus and specific intent to motor map his brain, and this will come from practicing over and over. I thank Shannon in advance for the energy and discipline that will go into my son.

Now to the pictures. Some of the faces may be familiar. Shannon and Lindsey are in the pictures at the bottom. Aiden is suited up and ready to go. As you can see, Maisy is not

too far away. Aiden continues to love to be read to. I brought several new Maisy books so that we can rotate them and not get too bored. In the bottom picture Aiden in wearing the complete suit and is squatting down. The knee section of the suit makes bending very difficult--it is taking quite an effort to squat!

This session Aiden met Miss Cindy. She and Aiden took a walk outside for our first full day. He was a little unhappy when we walked past our van (his DVD player is inside), but he still worked hard. He was pretty wiped out that first day, but he didn't fall asleep this time. It just shows that
he is considerably stronger now than he was 7 months ago.

The pictures that are left (I still have not really gotten the hang of this blog thing and so the pictures that should be at the bottom are at the top.) are those of Aiden with a less than happy face. Let's face it, usually he is a happy-go-lucky guy who is content to have a sippy cup and a good movie on the DVD player. Well, Friday that was not the case. Shannon wanted him to pay attention as he stepped over hurdles. Aiden---not so much. There was screaming and fussing and (guarded by Shannon) some falling. Surprisingly, no tears. He was just mad, and didn't want to do what he needed to practice.

I know that it may seem silly or cliche for me to find a paralell between my son's unwillingness to work on what he needs to do and my own spiritual walk, but I can't help it. As a parent I want my child to work to be the best he can be. How much more does my heavenly parent want that for me? (or for any of you!!?) I kick and scream (and may actually have tears), but that doesn't change the fact that in order to grow I am going to have to work; practice being more like Jesus, work to love my family, exercise my faith to see it grow, discipline my heart to maintain an attitude of prayer. My tantrum will not change the fact that true growth is hard work.

Please pray for Aiden's hard work. Pray that the adults in his life will know how to motivate him. Thank God for the miracles that He is doing.

Blessings to all,

Christa