Friday, July 31, 2009
Last Friday was Meat Day and we have been increasing our poundage every time. This time we shared over 700 pounds of meat between about 35 of us. It is working so well, and I enjoy the process. One of the things we do every time is wash out all the coolers we use to make sure we get out all of the raw meat juice. And it was particularly juicy this time! Cleaning the cooler is Travis' favorite part! When I say we have to wash coolers he makes sure that he can help, so we can't do it during nap or when he's helping mow the lawn with Daddy. I think it's getting to use the water hose that is so appealing. He knows to get the soap and the sponges, and to drag the coolers down by the outside faucet. He is a pro! This time he filled the coolers with water and then got inside to wash them. I suppose that was the most effective, but certainly not the driest!
Justin has been flinging his toys. He shakes a few times and then lets it fly! So we give him some toys (nothing with potentially damaging edges- I've gotten a few bumps and bruises from flying toys!) and when they are all gone, we make him "crawl" to get them. He doesn't like that very much, but he is getting better with that too. He is doing hand over hand okay, but he still refuses any weight on his knees. He stiffens his legs so you cannot even bend them if you tried! This is how his play area looks within a few minutes of flinging:
He can empty his basket fairly quickly. And he can reach really far! You know how when people stretch they spread their legs out and then lean forward? Justin does that without any effort. That's the hyper flexible joints. I kind of wish I had them too! That is something we are supposed to watch for to make sure he doesn't use that as a way of getting down on the floor to his stomach. We are supposed to make sure that he leans over to the side to get to his stomach, or swings his legs around to get to his knees for crawling. So far it's been okay, but it is something he is doing more, so we need to watch him.
Oh, and one more thing: I have no pictures, so you will have to use your imaginations. (Travis sure does!) We were cleaning a few weeks ago and Travis had his mop and bucket to clean the floor. Then we had to go to therapy and Travis wanted to take 2 buckets and the mop with us. Now, it's about a 25 minute drive to therapy, so I was sure he would forget by the time we got there and we could leave them in the back of the car. Nope. We got out of the car and Travis asked to get his stuff out of the back. He joyfully carried his cleaning supplies into the office building when the therapy center is located. Usually there aren't many people in the waiting area. But of course, not this day- packed! We walked in the door with Travis' mop and buckets and they all burst out laughing! Thankfully they are all parents with young children as well and I know they were laughing because I know they have had to do the same thing themselves sometime. Travis turned self conscious and he hid behind my legs and I couldn't sit down because I kept hitting the mop and I couldn't see so then I burst out laughing. You know, the laugh-so-hard-you-are-crying kind! Poor Justin didn't know what to make of his family. Thankfully Miss Penny showed up and helped us haul all of our stuff back to the therapy room. Travis proceeded to mop all the mats in the therapy room and as a treat he got a sticker from the prize box. (Usually a reward for kids actually having therapy- this was Travis' 2nd treat!) He also fielded several requests for house cleaning services. I know all those ladies went home and told their husbands the story of the little boy with the mop at therapy. I laughed for several days every time I looked at the mop and buckets. I think we are legends in that office already!
Thursday, July 30, 2009
The idea originated in Canada and they have been operating microboards for about 20 years now. Tennessee picked it up, and now about 13 states offer these boards. We have about 25 in Texas, and the number is growing every day. The board consists of people who feel like they have some way they can support or enrich the life of the person. Friends and family are obvious choices.
The board seeks out resources in the community that they can tap into to fulfill the wishes of the person being served. Some of the examples they used were if a person likes horses, they can search for a way for the person to become involved in that activity: volunteering in a stable, going to a camp, taking riding lessons, etc. The opportunities are limitless!
Justin is on several waiting lists (medicaid waiver programs) for services from the state, and he will eventually receive benefits from the government, but part of the major caveat is that he cannot own anything of value beyond a certain amount or it will disqualify him. Through this idea, the MICROBOARD can own things (cars, wheelchairs, houses) and the person can use them, but he will not be disqualified!
The second part of this concept is what is the most exciting: A microboard can apply to become a paid provider for one of the medicaid waiver programs, and then the board can choose who they want to hire to provide the service! The staff for a person can be hired to fit the person's needs exactly! For example, if the person with the disability hates to go swimming, loves dogs, and wants to go to the zoo every Friday, the board can hire someone who will agree never to force the person to go swimming, visit the pet store regularly, and visit the zoo every Friday. Not only that aspect of amazing, but for example if the state pays a provider $60/hr for nursing care, but the workers only make $40/hr, you can use the difference to hire a better quality of person. And, the board can bank the rest to save for something bigger, like for a service that the state doesn't provide, or a special car, a home, anything!! In the example that was provided, the microboard made a "profit" of $25,000/year!
Now since Justin is not up on the list yet, we cannot take advantage of this aspect of the microboards. But this is something that can carry itself beyond our (his parents) lifetimes to ensure that his needs are met and beyond. We aren't certain yet where to take this, but we know that eventually this is something we certainly need to pursue. I am telling everyone I think could benefit from this because it is so outstanding. And it's not just for people with disabilities from birth. It also works for older people with Alzheimer's or dementia, or someone injured in an accident. There is so much more involved so here's the link to the Arc of Texas who is organizing the effort in Texas.
I cannot tell you how much this eases my mind about the future. When Justin was born I immediately started worrying about what happens when we (his parents) are gone. I wondered if I would outlive him. It is a very scary thought. This is a great tool for helping Justin to live a happier and more fulfilled life. And it also takes some of the pressure and responsibility off of Travis (another one of our major concerns). I accept the fact that there is no guarantee, but I know that God provides for his children and this could be a way that he is going to provide for Justin. We are keeping our minds and hearts open to make the right decisions and plans. We are confident that God is showing us opportunities and opening doors for us to enter. I always come back to knowing that God loves Justin even more than I do. That gives me comfort when things get scary.
***One thing to note is that as of now, these Microboards are only state non-profit organizations, and not federal (not 501(C)3s) and thus donations do not qualify for tax deductions. This is one thing that is being considered currently. I know of at least one microboard in Texas that has applied for 501(C)3 status, but as of this date they have not received a response.
Sunday, July 26, 2009
Our group was very diverse: Some brand new to this adventure with babies less than a month old, others whose "children" are better labeled adults. One of the things we discussed was the poem by Emily Perl Kingsley entitled Welcome to Holland. We were given a copy from the genetics clinic when Justin was diagnosed. It is so perfectly applicable. I think it describes the experience so well. Some think the comparison would be better made with Mars than Holland, but I think Justin is so much more similar than different to other children. I get choked up every time I read that story, maybe even more so being a flight attendant myself. I have certainly had my share of unscheduled landings! I know what it's like to land in a place you didn't plan to, being totally unprepared and being throw into circumstances completely beyond your control. Some feelings are raw, making it difficult to get past the "DS" label, and others are at a place of complete acceptance, unable to imagine a world with their child any other way. Most are somewhere in between. And I think most of us vacillate widely any given day. It's not the life most of us would have chosen, but we love our children and will fight for them.
It was a really good meeting. I did more listening than talking as Justin was being very crabby. (He later developed a fever, which explains everything!) It was good to be able to relate to others and hear the feelings that seem too shocking to be spoken out loud not only admitted but also seconded. I wish I could have had more time for chatting afterwards, but now I think the most important thing I need to do is pray. I live my life encountering dozens of people every day and I have no understanding of the depth of pain they are feeling. That emotion can be so near the surface and no one knows and seemingly no one cares. I want to care, at least for the people God sends through my world. After all, ALL of our children are imperfect. Some are just faced with it sooner than others.
Friday, July 24, 2009
They both chew on strawberry teethers and make sounds. She starts imitating him, and then tries to change it a little to get him to follow her. He does it some, but not very often yet.
She has a mirror for him to watch himself. He likes watching himself chew on the table. I don't think that's what she was intending for him to watch!
She has flexible tubing that she lets him chew and then she pulls down a bit to strengthen his jaw. Then Justin likes to stick his tongue under and she pulls down on his tongue. That is even funnier than this! She saw that Justin did some mid-tongue retractions (like cupping his tongue). That leads to making sounds that use the tip on the tongue touching the top of the mouth (like "l"). She gets so excited when he does something like that, and I feel a little slow on the uptake. I just follow along, kind of like Justin does!
Justin plays along very well. I think Miss Char is good at adapting and letting him take the lead so she is not forcing him to do something he really doesn't like. Teething sometimes helps because he is so willing to put things in his mouth. And she uses flavor sprays, frozen teething toys, and vibration tools to make it more interesting. I even got my own tubing so we can play imitation games at home!
Tuesday, July 21, 2009
But we had some fun times at Me-Me and Pop's house! Travis and Pop decided to set up the tent outside on the deck. They also got out some of the camping gear and played the boy version of "house". For the past two days he has slept in his tent, ate in his tent, played in his tent, and he has made Pop carry it up and down the stairs and in and outdoors several times. I do like the magic of the tent though. It caused Travis to take a 4 hour nap yesterday! I am considering getting one for here at home..... And in true Travis form, he said that he wanted to stay at Me-Me and Pop's house forever. Even when I said that Daddy and Mommy and Justin were going home, it still took some convincing for him to agree to come home.
Monday, July 20, 2009
So we are staying with grandparents, and of course they are more than happy to keep us for as long as we want to stay. Having spent hot nights with the kids in AZ, I will be more than happy to stay until the house is at a tolerable temperature. We're all good for now!
Friday, July 17, 2009
Thursday, July 16, 2009
So today we were at PT and I cannot say enough about Miss Penny. She really loves Justin, I can tell. That just makes it so much more real. I am not sure of the right word. She tries different things and "listens" to his moods. He has good and bad days and she does such a great job of adapting and working with him. She had him on his hands and knees and a toy out in front of him to pique his interest. And he, on his own, moved his hands like he was crawling to get to the toy! Miss Penny was supporting his trunk, and he didn't really move his knees, but he moved his hands! I couldn't help myself and I cried the biggest tears of joy you can imagine. Justin got cheers all around, and lots of hugs and kisses. He didn't understand the thrill, but he liked the attention. It was just the jolt I needed to keep going.
Justin also did wonderfully on the big exercise ball. Miss Penny laid him on his tummy and he pushed himself up and looked in the mirror for several seconds, 5 different times! It was so exciting!
Miss Penny said that she was talking with Miss Char (ST) after Justin's session on Tuesday and she was gushing about how much she adores Justin and how wonderfully he is doing and Miss Penny enthusiastically agreed! More warm fuzzies. It was a good day.
On a related side note, we reached our 25 visit limit/review last week, and so far, nothing. Everything is prepared for when insurance requests more information, but they haven't yet, so we are just waiting. There are two of us in the office who have reached our limit and nothing has been requested from either of us. Our plan is still to switch to Randy's insurance in September, so if anything happens, we should only be a short time without therapy. Given how great things are going though I hate to waste any time. But just like I have been forced to slow down with my broken foot, I am having to slow down and celebrate whatever moments we have.
Tuesday, July 14, 2009
So I arranged for Travis to stay with a church friend every week during therapy. It is difficult to ask someone to be prepared to receive an energetic three-year-old at 8 am, but we have some of the most amazing friends. I cannot boast enough about the way everyone has been so willing to help us. I call and announce myself, and the first question I hear is, "Which one do I get?" That kind of gives me warm fuzzies!
We have been talking with Travis about this all week because he is going through a one of those attachment phases. He has been very excited and he was ready this morning early and said he was ready to go! Until we drove up to her door. And then he wanted me to stay. And he wrapped him arms around me as tightly as they would wind. You know, when they are holding so hard that you don't have to hold on at all? I think it's times like this that are even harder than things like Bible class or swimming lessons, because it's not for Travis, but for Justin, and I feel like I am failing one to care for the other! I knew it was important for Justin, but maybe we could try to make it work? Was I misjudging what would truly be the best thing? Driving away this morning I was in agony! I felt like Travis would calm quickly, but I wouldn't be able to return if he didn't! Such a dilemma!
Of course, Travis was fine, and when I returned he didn't want to leave. He said he wanted to stay for 6 more hours. Well, it wasn't quite that long, but he did have a good time, and I think we will live to see another week. And he already is asking when he gets to go back. So at least it was the best thing for today. Who knows about tomorrow?!
Saturday, July 11, 2009
There are three other kids in Travis' class. Here is the class discussing that you swim with spoon hands, not fork hands.
And doing "reach and pull".
And his favorite part is jumping in to Miss Michelle and "swimming" back to the wall. The other kids are much better swimmers than him, but it gives him great encouragement.
Travis likes sitting next to one of the girls, Isabella. Mostly because they are the two who get in trouble together. So they usually get separated. But the funny thing is that he calls her Grizabella because that's the name of Ami (my sister's) cat. I keep correcting him, but it hasn't sunk in yet. It's a good thing she's too young to know to be offended!
Tuesday, July 7, 2009
And Justin was a willing participant. He didn't have much choice, but he was very interested in what was happening.
This is how he looked after being adorned.
He did some tugging and pulling to see what was attached, and then...
into the mouth! Kind of saw that coming, didn't you?
I rescued several stickers from almost certain consumption, but he sparkled until bedtime with some of those shiny pumpkins. It entertained ME for quite a while anyway!
Saturday, July 4, 2009
In the morning I had to decide how to get to the doctor, since of course it had to be my right foot. I arranged everything, and then Travis woke up. With a fever. So then I had to make a doctor's appointment for HIM and find someone else to get him to the doctor. Of course the appointments were for the same time, opposite directions from the house. It took several phone calls, and some logistical arranging, but we got it worked out.
My neighbor agreed to drive me, and I am so thankful for family nearby. They arrived quickly and handled Travis and Justin. Taking Travis to the doctor is no fun trip. Travis is a horrible patient. He screams bloody murder, and he acts like the doctor is going to pull his ear off when he looks inside. Travis flat refused to cough for the doctor, until he was writing up his notes, and Travis says, "Hey, Pop..." and then coughs for him. Perfect!
To end it all, my foot is broken- one of the toes, but way back in the joint. And Travis has bronchitis and an ear infection. He has antibiotic, and I am off work for 4-6 weeks. And we ordered pizza for dinner.