Friday, July 31, 2009

Pictures and Such

I realized that some of my recent posts haven't contained many pictures, so I thought I would share some recent happenings in our home.

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

Microboards 101 *Update

Randy and I went to an informational meeting last night about Microboards. Randy and I first heard about them last year right after Justin was born when we went to a seminar about estate planning. Microboards are non-profit companies whose purpose is to serve a person with diminished capacities, either physical or mental, and address the person's planning and support needs. It is a bit confusing, but it is an awesome concept!

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

The Loss of the Perfect Child

I went to the monthly meeting at the Down Syndrome Association yesterday. I am rarely able to attend because I am working, so I took advantage of my broken foot and went to the meeting. They bring in speakers on various topics that are relevant to us and our families. Last fall I attended a meeting about estate planning which was wonderfully helpful. This month the subject was "The Loss of the Perfect Child". I think the title really sums up the message- dealing with the loss and grief when you discover your child isn't perfect. Of course, no one's child is truly perfect, but at birth we all think our child could be president one day. So when there is a problem, those dreams are dashed sometimes before a mother is even able to see her new baby.

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

More Speech Therapy

Okay, I just have to confess that I am fascinated by Justin's new speech therapist and her techniques. It's so different from anything I have ever seen. Now that Travis doesn't go to therapy, I was able to catch some pictures of Miss Char in action.

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

A Little Vacation

Our A/C is now fixed, nothing major unfortunately so our old unit is still limping along. We are back home, settled in for the night.

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.

I think Me-Me and Pop need some time to recover. They are taking a much-deserved day off tomorrow! And I will be there at 8 am to clean up the whirlwind of a mess we created. It doesn't take much of Travis to exhaust a person.

Please Pray

When we learned that Justin would need heart surgery, some friends hooked us up with some of their friends whose son had also gone through heart surgery at TCH the year before. They gave us lots of insight and advice from someone who had been there and gone down the path we were facing. Their son did not have the exact same defect as Justin, but on the outside, there are a lot of similarities with various defects. We knew going in to Justin's surgery that he may need another surgery in a year, 10 years, or even 25 years. Their son ended up being one of the ones who needs another surgery, and sooner rather than later. He underwent his second surgery this afternoon, and he is now in the same CVICU unit where Justin spent three days last year. The second surgery is always a bit more scary because they have to cut through the scar tissue to get back inside. There is no other way to get into the heart except through the ribs. The recovery is tougher and now their son is older, and he understands more, and he is much more mobile! They are such a wonderful family, and this time they have another baby for whom to care. That makes it harder too! They have long drives back and forth to the Medical Center, uncomfortable nights on those sponges they call mattresses, and the sometimes irresistible urge to wish it all away. But I know that this is part of God's plan, so please pray that they would be strengthened, that they would have clear heads to make good decisions, that they would feel confidence in whomever is caring for the child that they cannot be with at that time, and the vision to see God's mighty hand working through it all.

Monday, July 20, 2009

The Dog Days of Summer

We had a wonderful evening last night with some friends who came over for dinner. During the eveing, it started getting hot. There were about 15 extra people in our house, so I wasn't too concerned, so we turned the fans up a little higher. And then everyone left, and it was still warm. And we got the kids ready for bed, and it was even warmer. By then we were beginning to accept that our a/c might be broken, and we packed everyone up and took off for Me-Me and Pop's house.

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

Mmmmm Tasty!

So one of the things that we do in Speech therapy is play with a little fan that has soft blades. Miss Char blows it in Justin's face to get him to open his mouth and make different sounds into the fan. Justin just likes touching it and so she has been holding his hand to help him stop it and then enunciating the word "stop" very slowly and clearly to attempt some mimicking by Justin. Well, he opens his mouth, but he rarely makes noises yet. But it accentuates one of Justin's favorite methods for "input" being through his mouth. Of course, like any child his age, everything goes in his mouth to taste it. But when Justin is happy or excited he opens his mouth as wide as he can. And whatever is closest goes in. Often it's a chin, sometimes a foot (that would be Travis') but last night he tried something new. He licked Randy's goatee!

Thursday, July 16, 2009

Therapy Update

I have been discouraging myself lately concerning Justin's physical progress. He just doesn't seem to have any interest in crawling and he won't support himself on his legs for walking. The range for walking is anywhere from about 18 months to 5 years, and I have heard of both extremes. I have been preparing myself for the long haul, even doing some exercises to get stronger for carrying the extra weight and learning how to lift and carry heavy loads safer and easier. Kind of silly, and maybe premature, but sometimes I can't help myself.

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

The Best Thing?

This week I made the difficult decision not to continue taking Travis with us to Justin's speech therapy. The room is small and Travis can be quite distracting. That isn't a problem for PT since Justin can turn his head and Miss Penny can still be doing her thing. But speech therapy is a different story. Miss Char is truly a blessing and she does not mind at all, but I want to ensure that Justin is getting the most benefit possible during these sessions. And plus, then I can pay more attention to therapy and see what I am supposed to be doing at home.

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

Swimming Lessons

This week Travis started taking swimming lessons. I decided it was time, both for him and for me, that he learn to swim. We signed up back in May and he has been telling everyone that he is going to be taking lessons, but when the first day of lessons came he kicked and screamed and cried and begged not to go. I nearly had to carry him into the car to go the lesson! The cried for about 20 minutes of the 30 minute lesson, sitting on the stairs wailing pitifully. I was beginning to wonder if I had made a mistake! I have committed us to every day lessons for the entire month! But I talked with Travis about how important it is to learn how to swim, and if there were other lessons he didn't want to attend, that could be discussed, but swimming wasn't one of them. And each day was a little better throughout the week. Wednesday he cried, but he stopped within about 5 minutes and then actually participated. And by Friday he was getting in trouble for talking too much and not listening to the teacher. This is all much better than when I took swimming lessons as a child. I cried during every class until the very last one. I did everything the teacher asked, but I cried the entire time. So my mom threatened me with more lessons if I didn't behave during the last class. Darned if I wasn't the happiest child in the class that day!

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".

Kick, kick, kick! Travis actually kicks with fairly straight legs most of the time.

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

Exterminators for Hire

I have told you of our many small critters we have caught in our trusty trap. There are no armadillos, possums, or raccoons that are safe from us! (We even caught another armadillo last night!) But we have moved on to indoor pests now. For several years we have had wasps somewhere on the eaves or rafters or somewhere, and they come in through the vent in our bathroom. Sometimes it's just one here and there, and other times there aren't any for a long time, but apparently the lack of rain has driven them inside in record numbers. I am becoming the master wasp remover! Last week I removed 4 in one day, and Sunday there were 4 at one time! They don't ever bother us, but I still want them out of the house. I use a spaghetti sauce jar and trap them against a wall or ceiling and take them outside and let them go. We tried to see if we could kill them so they wouldn't come back, but it took more than 3 days to suffocate them, and they don't sit still long enough for us to stomp on them. It's probably the same wasps coming back again and again, but I am not sure how to prevent their return when we cannot be certain where exactly they are entering. So until then, I leave the jar in the bathroom and check the ceiling and vent before I sit Travis' bare bottom on the potty.

Sticker Day

Travis is not a very crafty child. He does not particularly enjoy coloring; he likes scissors, but not for long periods of time, and he doesn't like activity pages or books. But sometimes, he gets the bug. I am not sure what prompted it, but yesterday he wanted stickers. LOTS of stickers! And he wanted to put them all over everyone and everything. We had Halloween stickers, Jesus (heart) me stickers, Easter stickers, truck stickers, bug stickers, and Thomas the Train stickers. We were enjoying stickers all day. And this lasted all day, which is also unusual. Here is some of his art work:

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

Ups and Downs

Travis has been having some bad dreams, so we've had to go upstairs and check on him more often during the night. I went up to check on him Wednesday night and when I came back down the stairs I slipped on the last few stairs and hurt my foot. That was at 10:45 pm. Randy used to be a trainer for the football team so he does great with injuries. He got me all fixed up and then we debated whether it was broken, and whether it warranted a trip to the emergency room. We decided it wasn't worth the co-pay and I took some Tylenol and tried to settle down. It took a while for the pain to subside enough for me to go to sleep, and by that time, Travis was in our bed from bad dreams. Randy had wrapped an ice bag to my foot, so I couldn't move much while I slept, which was okay, because Travis is quite the cuddle sleeper.

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.