Another Week in Review

This past week was another crazy one. Bible study started up again after two weeks of spring break, we had 4 therapy sessions, Randy finished his amazing power point show for Justin's birthday party, I made 300 SMALL cookies for party favors, and we received word that Justin is being denied speech therapy by our insurance carrier. Whew! It makes me tired thinking about it. Sometimes I am glad that I don't know everything about the week before it starts.


Now, more detail: In Bible study we're doing a study about the churches in Revelation 1-4. The study was written by our church's women's minister. Week 1 was good and I am looking forward to the future weeks.


Therapy is gong well. Every day I feel like Justin is using his legs more to push and kick. HE likes jumping, but really only when someone is holding him. He'll go in the jumperoo, but it's not his favorite. He is also trying to wiggle/inch on his belly. He will pull his legs up under him, but he won't support himself on his arms for more than 1-2 seconds. And he won't push up onto his arms on his own. But it's progress, and it's fun to watch.


The power point is SO cool! I am hoping to figure out how to post it, but it's a HUGE show with lots of slides so I'll have to play around with it a bit. It was interesting to see which pictures Randy chose to include. I gave him full creative authority and he was VERY creative! I love watching Justin grow from the puddle we used to pose in the corner of the couch propped with pillows because that's the only was we could get his picture pseudo-sitting, to sitting and reaching for toys all by himself. It takes motherly pride to a whole new level!


I wanted to say thank you to everyone coming to Justin's party and a simple note just didn't seem sufficient so I decided to make cookies to go with the notes. Plus, Travis is a great cookie maker (or beater-licker I should say). So we made cookies shaped in the number "1" and rockets and teddy bears, which kind of went with the theme of the party. It was very cute, but time-consuming. By the time I was finished, every counter in my kitchen was covered, as well as the table, so I proceeded to assemble the chicken casserole for dinner on the mostly-clean floor. It was just dump and stir, so I wasn't too concerned. And Justin was at "helping" level too. It worked out, no one went hungry, and the cookies are yummy!





(The toys are on the counter because they had to take a time out because they weren't doing what Travis wanted them to do, so they- and he- needed a break.)




And then insurance. Again. The thorn in my side. I feel like Charlie Brown and I just want to yell, "Aaarg!" sometimes. None of the situations have been resolved in what I consider to be our favor. And this one could be huge. Justin doesn't have an acute illness, non-chronic condition that will result in speech being restored after therapy, nor does he have a gross anatomical defect present at birth, so he's not covered. I think an extra chromosome is fairly grossly anatomical, but evidently not. So now starts the appeal process, and I only have 60 days before it's a final decision, so I have lots of research ahead of me. And meanwhile, do we stop therapy, or risk having to pay out-of-pocket? Considering the word "orthotics" was mentioned at therapy this week (at about $1500 a pair, some of which COULD be covered by insurance...) I am a bit overwhelmed. My biggest concern now is how to fight insurance in a "christian" way. Is that possible? Is it an oxymoron? I am told, "You have to push and fight. The squeaky wheel gets the grease..." Is that the right way? Is that how God wants me to approach this? I wish that we have infinite resources such that I could just pay for everything without needing insurance. Maybe insurance isn't the way Justin's care will be accomplished. Maybe there's another way. I just don't know! And I only have 60 days to figure this out.


I will tell you about Justin's party. (It was FABULOUS!) But I had a friend take pictures and I will wait until I get them so I can tell AND show you. So give me a few days. I worked last night too, so I am a little tired. And we have about the same week ahead of us. Only 3 therapies, but with a little boy's BIRTHDAY in the middle! So great!!

A Family Affair

Our family is very concerned about each other's teeth brushing habits:

This is Sunday getting ready for church, Justin thought Daddy needed a little help reaching the back.

And this was today (laundry day, please excuse the mess in the background...) I came in to find Travis trying to shove Justin's toothbrush in his mouth. Justin didn't even seem to mind. His face was quite slobbery by the time the operation was over.

Justin is mesmerized by Travis sometimes. Travis can nearly maul him and Justin is giggling and laughing. Like today:

The pictures make it look like Travis is hurting Justin, but he was having a grand time. And Travis was sucking Justin's fingers. Not sure about that...

Comparisons

These days, I really don't even think much about Justin having DS. He's mostly just Justin. When we are out, sometimes people will stop to look at the boys and I don't even wonder what they think. We don't go to the doctor that much, surgery is over, and we are approaching his first birthday. It's kind of just LIFE now. He's not a baby, even though he is probably just over 14 pounds and still wears size 2 diapers, but he doesn't seem like a toddler. He cannot walk, he cannot crawl, and he cannot really even support himself on his arms and knees. It doesn't seem weird, it's just who he is.

But sometimes I cannot help but compare. Everything! And sometimes we come out better, and other times we fall so very short. I read other DS blogs and hear stories of long NICU stays and feeding tubes and children with BOTH autism and DS and I think we have it so good! And then there are other times that I see other DS kids who are walking at the typical age and are so advanced and I wonder if we will EVER get there. And that says nothing of my comparisons to typical children and families. I sometimes think it would be nice to have another child, but the thought of risking another child with DS paralyzes me. I long for the days of being carefree. Even just having Travis felt carefree compared to now.

I have really had to focus on God's blessings and God's promises to me in way that I haven't ever done in the past. When the rug was pulled out from under me I learned quickly who I needed to trust to pick me up. I have tried so hard to rely on God and not look to other people and their lives, but sometimes, I just cannot seem to stop! So I am on a roller coaster that is driven by circumstances. And circumstance change. Constantly! As fast as the roller coaster reaches the top, it has to go down again. Sometimes the dip isn't far, but other times I feel like it's a free fall! I keep striving to have JOY. Not just happiness that comes and goes as life changes, but joy that comes from knowing that everything that I have is from God. And I have SO MUCH! That everything teaches me and helps me to grow closer to him and to heaven. I want the deep down joy that Jesus gives and not the fleeting feelings that are circumstance-dependent. Some days it seems so close, and other days I wonder if I ever really knew what it was like at all. My grandmother wrote me a note which sums up what I hope to achieve. She said, "I pray you can wake up seeking God's advice, live the day trusting him, and go to bed thanking him." What else can I say...It's all about God and his plan for my life. He'll give me the wisdom, the strength, and his spirit to do the task he has given me. If I would just quit looking at other people's tasks! Just for today maybe. That's all I can face anyway, just today.

Bluebonnets

Yesterday we went to a park that sows bluebonnets to take some pictures. Travis isn't keen on having his picture taken these days so there has to be some reward, like playing at the park, afterwards. The weather wasn't great, but we got a few pictures.

And guess what?! They are building a new elementary school next door to the park, so Travis got a GREAT reward!

Auto Response

Travis has some responses that remind me of the "auto responses" that come via e-mail. The responses are seemingly without any thought to the attempt at communication. That's my toddler world!



One is "What?" This is often when he is playing and not really paying attention to what is being said. But it is just as likely to comke out when he asks a question and did not stop to listen to the answer. He can say "what?" when he has clearly heard what is being said, but for some reason he chooses to ask for repetition. He can be playing with his toys, not really caring what is going on, but he will say "what?" just so we know he's still there. It prompted me to ask the doctor if there is any way that he might have a hearing problem. He kind of chuckled and responded that at his age, if he can speak, he can hear. Great, so already the selective hearing has begun. (I have seen what it turns into on the airplane this weekend. I was passing out immigration forms and my question is, "Are you a US citizen?" And one man's answer was, "Bloody Mary." Sure, whatever. I LOVE Spring Break.)



Another is "Why?" This is of course the typical toddler question, but Travis asks it automatically, even if he already knows why! I say ANYTHING and the response is "Why?" before I even finish the sentence. I can say, "We're going to the park, let's put on your shoes." And Travis says, "Why?" Now, in my mind, the why has already been clearly answered. So I have started answering him with "Why?" right back. His favorite thing to do when driving around (well, for him it's riding, but you know what I mean...) is to look for construction workers. When they're not working, the question is "Why?" We've discussed lunch breaks, rainy days, it not being a work day, etc. but STILL I get asked why workers are not working. So, I asked him why the workers were not working and he was able to give me all the right answers. So why did you ask me??!! I am more than happy to answer a question to which he really doesn't know the answer, but in my mind I am starting him down the road to critical thinking. It helps me sleep better at night anyway.



And one of my least favorite is, "What's for dinner?" (My response) "I don't like that. I want something different." When he starts cooking, that sounds great to me, but until then...it's whatever floats mommy's boat that night! And besides, Travis eats EVERYTHING! Seriously, tonight he tried tofu and he just said that he thought it would taste better if I would mix it with something else. (Yeah, I think so too!) Travis eventually caves and eats whatever I fix, and usually a lot of it. So I am not sure why the initial protest, but it happens every night. I am just glad that he is at the age that I can say, "Fine. I hope you like what we're having for breakfast." And there has only been one night that he hasn't eaten dinner, and that was because he was playing, playing, playing at a friend's party and couldn't bear to stop and eat. He didn't even eat the CAKE, so I wasn't too worried.



I am sure there are others, but these were the ones that come to mind right now. I love Travis' curiosity and I never want to squelch it, but maybe just mute it for a bit.

Tidbits

So I have been busted a couple of times now for not posting frequently enough. It is not for lack of subjects I suppose, but lack of time. I have been working on some posts, but here are some tidbits to get you through:

1. Travis fell out of bed last week. I ran into his room and picked him up and said, "Oh, honey, did you take a tumble?" To which Travis replied, "No, I fell out of BED!" Oh, got it!
2. It was Ami's birthday last week and we had her over for lunch and cake (a birthday necessity!) We sang and blew out candles and we gave one of the number candles to Travis to lick off while we cut the cake. We looked over and Travis was chewing, and we had not given him and cake yet. "What are you chewing Travis?" He opened his mouth to show us (his new favorite trick) and it was full of white bits. Little white WAX bits. Yuck! We did our best to rinse the wax out and then gave him some cake to wash it down. We're going to have to get a new number 2 before Justin's birthday next year...
3. My sister (Ami) is moving to Seattle. She is getting married and moving, far away. She moved here when Travis was 6 months old and we have loved every minute of her being here. She has been at birthday parties, holidays, Justin's birth, surgery, and random fun days. Now we will miss her terribly, and miss the relationship that she has with the boys.
4. We have been struggling with Justin's BMs. Not a pleasant topic, but one of the things that result from low muscle tone. It's just harder to move them down and out. So we have started keeping a food diary for him to see how the binding vs. loosening foods affect him. It's so bad that he cries and wakes up from sleeping when he has to go. The only positive thing is that he makes marbles, which can be picked out and discarded rather than wasting a new diaper. I was just talking with a friend this week about the frustrating habit of children to make dirty diapers within 20 mins. of getting a clean diaper. Not good for the budget or for landfills!
5. We are planning Justin's birthday party! Yes, he is almost 1! We are making a slide show of pictures from Justin's first year. It's fun to look back at everything. Travis likes looking at pictures too.
6. I am working a lot the next 2 weeks. It's Spring Break so the airplanes are packed and every one's nerves are a bit tense. I am enjoying it in a way. I like flying at night. Adults are almost as sweet as children are when they sleep.
7. We got the jumperoo out of the attic and set it up for Justin. He is jumping like a champ! He is really using his feet and legs more and more. He even tried to pull himself up to standing a couple fo times on a toy that our therapist was using. So good!

So that is what we have been doing this week. Like I said, I am working 4 days next week, so postings will be scarce, but I will try! Thanks for being patient.

Six Months Post-Surgery

Today is six months since Justin's heart surgery. These last six months have gone a whole lot faster than the five months before it! Sitting at home waiting and thinking about what's coming is a lot harder than healing and recovering. We have been so busy with therapy and really, getting adjusted to the pattern of our life, that the time has gone by with lightning speed. I am so thankful for how far we have come. I had no idea what to expect and it has been good. Even better than good! I love having the doctor say, "Come back in six months." I can do six months! I will even wait with JOY for the 2 hours the doctor is late when the news is good. The first appointment after the echo was almost the worst day so far. Even worse than the confirmation of Justin's diagnosis. We truly thought we had escaped heart problems, and I was researching the NEXT worst thing that Justin could have. I am not a hypochondraic by any stretch, but I admit that I have taken Justin to the doctor earlier in an illness than I would Travis, or certainly myself! That's why I LOVE our pediatrician! She is SO patient with me and she doesn't ever make me feel stupid. And she is so good at telling me the things I should watch so I can feel useful and ahead of things. The doctors are quick to point out that we could have problems in the future, but God is SO faithful that I know he will prepare us all for whatever comes. And Justin's scar is amazing! It does show a bit more than in the picture, but it is not prominent at all!

Rodeo Time

It's rodeo time in Houston, and I really wanted to take Travis to see the animals, especially since the ones at the zoo were all sleeping last week. It was Randy's day off, so we all went to take it a little Texas culture. What was Travis' favorite thing? Really, do you need to ask? It was the tractors! He was able to sit in a tractor and "drive". They put flat screen TVs in the windshield so from the inside you would see what a farmer would see if he was driving in a field. It was very fun! There were three tractors, and only two had the TVs, so the other tractor was just not even worth Travis' time. Even while we were at the petting zoo, Travis kept asking if we could go back to see the tractors.

So BESIDES the tractors, what did we see? The kids' area is called AGventure and they have lots of farm animals for the kids to pet, ride on, watch giving birth, and see getting milked. They have cards that the kids can collect from the different areas (like trading cards) with cool animal facts. Our favorite is of course, Farmer Joe and his tractor. We also watched pig races and some people riding the mechanical bull. It was beautiful weather, and Travis had to be pulled off the tractor when it was time to go home. Both boys fell asleep in the car on the way home. It was a fun family day. I really like Randy's days off!

Here's a few more pictures:

I am not sure rabbits are from farms, but they always have them at the rodeo and they are so cute to pet!

This is the Borden calf (you know, Elsie). Her name is Buttercup. She was sleeping of course!

Travis always kept his eyes on the other animals while in the petting zoo!

Mealtime Woes

We really have been very blessed that Justin eats so well. I really think he did better making the transition to solids better that Travis did. But, there's always a but, do you know how children have these PHASES? Like, things are going well and then the child decides to do it differently. I think it's out of spite. I am certain it's to make sure we never start thinking that WE have any influence over what happens. I know I sure don't. I never dare to claim that my children are the way they are through anything I have done. Of course, if you take the good, the bad comes along nipping at your heels.

So, Justin was eating very well, and now he has decided that he wants to feed himself. But he really can't. Not by a long shot! So, I have resorted to giving him the veggie sticks that he uses for speech therapy to "eat" while I attempt to shovel spoonfuls in between. He doesn't really eat them. He sort of gums them and spits out the pieces he breaks off. He does get some down, especially if the bits are followed by carrot puree chasers. It does take a while. A LONG while. But that's okay, Travis can take over an hour to eat, and who said I was hungry anyway? But it works. I got enough down him this noon for the first time in several days. Of course there is a slight mess that results. He will only grab the sticks in his right hand and he inevitably drops them as they get too small for him, so they end up in his bib. That mixed with the watery fruit juice he dribble-drinks make paste. I think it would rival Elmer's.

But he has fun. Oh, does he have fun! And, since in most things I enjoy a challenge, especially one so happily conquered, we're good. Until the next phase...

Cousin Lauren's First Birthday

We traveled to Dallas this weekend for our niece's first birthday party. She just mastered walking within the last few week, and she was tottling all over the house. Since we were all sick at Christmas we missed getting to spend time with her family then so we were really looking forward to this trip.

Travis LOVED playing with Lauren! He really did so well. He gave her toys to play with and gave her lots of hugs. The weekend is best explained through pictures, so here it is:

The birthday girl looked beautiful in her dress and crown, but the crown only lasted for the picture and then in came off.

This pretty much shows how the present-opening went. Travis was very into the presents and wanted to open the next one as soon as one was opened. Lauren enjoyed the bows and wanted to play with whatever gift was just revealed.

Lauren got her own little cake to destroy, I mean eat. And eat (destroy) she did! She looks a little mischieveous doesn't she? My favorite picture is the paparazzi!

Travis really enjoyed his cake, as usual. He nearly fainted before we cut the large cake for the rest of us. Did I mention he likes cake?

Travis did so good with Lauren. They really enjoyed playing with her new Little People doll house. Travis paticularly enjoyed making the people go potty and flush the toilet. (That's his arm coming through the house to grab Lauren's arm!)

Travis had a great time with Uncle Craig and sent him to the corner often for his misconduct. He checked Uncle's Craig's ears and then got his ears checked. He also "raced" him to finish their meals. Travis always won and made Uncle Craig very sad.

And we finished the weekend with the obligatory "cousin" pictures. It was quite the photo session! I don't think I got any with them all looking the same direction, but here are some of my favorites:

Attending Lauren's party reminded me that Justin's party is coming up quickly! Only a few short weeks and our little boy will be one year old! It's kind of the end of the beginning. I often think of "last year at this time..." and soon last year will have us in the same place as this year. The same, but also SO different!

Dental Hygiene and Therapy at the Same Time!

One of the things we do at speech therapy is use a fancy electric toothbrush to "wake up" the muscles in Justin's mouth. Our therapist started by saying that some kids don't like it, and we needed to get him used to it by rubbing it on his arms and cheeks before we started it on his lips and in his mouth. It took about 2 sessions before he was grabbing it out of her hands and putting it in his mouth himself. He bites on it and stops the vibration. He really gets into it (much to the therapist's surprise and delight!)

So, to pratice at home she told us to get a kid's electric toothbrush, which we did and he loves it. It's his favorite part of the morning and evening ritual. He even fusses when we take it away before he is finished. His two teeth are VERY clean. Now, if he could only make a few more!