Tuesday, August 3, 2010

Even babies can hit a wall

Well as though things weren't crazy enough for our family we decided to bring a new addition into the mix. We welcomed Dexter a puggle (pug and beagle cross) mix puppy into our home on Sunday. He is feisty but loves to snuggle too. He has beagle ears and a pug tail. The dad is "sneaky neighborhood dog," and all of this combines to make one cute family member. He and Jade play well. He eggs her on too and does sneak "attacks" on her. It so reminds me of my kids trying to scare John or I...so cute. And yes he does bring more work with him, but he also brings companionship for ALL of us as well as a new feel to our home...a good feel.

Our first night with him was rough as he definitely has the beagle howl. But then I realized he just needed companionship. I moved his crate so it is face to face with Jade's, the snoring wonder. He starts whining and she snores loud and he calms down...it is very cute. What a good big sister!!!

He is also motivation for Jasz. Jasz wants to be like Dexter. So he crawls and barks (which he sounds like a yippy puppy when he barks). Jasz calls Dexter Jade, but that is normal for him. I realized Monday that Jasz groups things together and gives that group of things a name. So, Jade means dog. although he started trying to say "dex" today. I also realized that "Bewa" must mean sister. He has never said Alina. A couple of times it has sounded like he was trying to and his mouth just can't quite get it. Well, Monday morning he was climbing on Alina, hugging and trying to tell her something. She wasn't fully paying attention to him so he started calling "Bewa. Bewa" until she responded. Once she answered him he stopped calling the name. I think Alina is hurt by it, so I tried to explain that it's his word for both of them because he just can't say her name yet.

This week Jasz is clearly sick of working. We all hit that point where we just are tired of working so hard and frustrated, and just don't want to do it. This week Jasz has hit a wall. On Monday when Trina came to work with him he tried to distract her at every turn. He also all but refused to stay in the play room where we normally work. We tried to figure out why. One theory is his "therapy" pj's. I finally sewed those pants far enough down that he was made uncomfortable in them. On Friday he wore them for about 10 minutes just fine, but then he tried to shift to get comfy in bed and realized he could splay his legs as much as he wanted. Oh the wailing. I endured for 30 minutes and then could no longer. He almost went to sleep immediately.

Saturday we went to Lake San Antonio. this was a fun, relaxing day in the sun and water and the whole family truly enjoyed it. Jasz particularly loved dumping "sand" down his back. I was still finding small rocks in his diaper the next morning.

Sunday is when we brought Dexter home, it was also the night when Jasz slept the whole night in his homemade therapy pants. He cried again but just as I was about to rescue him he fell asleep.

This brings us back to Monday and working with Trina. When he would stand up his feet were more out turned than they ever have been and when Trina tried to correct them he would say "ow, ow, ow." When we tried holding him in our lap straight legged he also said "ow" crawling he was ok with as it was fun to pretend to be Dexter. So Trina and I weren't sure if "ow" was actually meaning that hurts because he has for a while said ow as just a fun sound. So she told me to talk to Sherri about it.

So today. Today Sherri came over and the appointment was set up for what is normally a good time for Jasz. But today he fell asleep about an hour before the appointment, which is when he would normally eat a snack. So when she arrived, I woke him up. And he wanted NOTHING to do with what she wanted. She did start the appointment by apologizing for giving me so much to do last week. She said she didn't want me to stress about doing it all at once, this was going to be a long process. I had a list of questions for her the first of which was could the therapy pants be making him sore. She said yes absolutely. But when she looked at them she said they weren't going to do the job because the legs of the pants were too wide. So I need to get basically stretch pants and sew them together. I have the pants I just need to do it. Though she said they may be good for slowly introducing the therapy to him. But she suggested I put the correct ones on him during the day, so we don't interrupt his sleep too badly. And for only 15 minutes to start so he doesn't get too sore. But it needs to be done to straighten his legs out.

Second question was about swimming and if it would be god for him. She said it would not build the kind of muscle we want but if it lets me hold his leg straight while he kicks (so he doesn't quite realize that I'm doing it) than it would be a great therapy tool. The only problem now is that the weather in SM has been anything but hot. So a cold pool will not be a good idea. I want it to be fun and I don't want his energy being spent on keeping his body warm. The Paul Nelson aquatic center I have already discovered is not heated very much so unless the outside air temp is high enough it is not a good experience. What I really need is something slightly cooler than bathwater and big enough for me to get in too...any ideas?

Third question was about shoes. She suggested I revisit Robies (spelling?) and see if we can find his right size. The sandals she said would be ok if the length wasn't so off. But he clearly wants to wear shoes. So I guess we try Robies.

Last question: car seat safety. I got to thinking this last weekend that you know what Jasz' muscles are underdeveloped. There is an assumption in car seat guidelines that if a child is a year, 20 pounds and 26 inches long they are developmentally able to secure their neck against injury. But that assumption would be false in our sons case. She tested his neck muscles and said they were pretty good as there was no head lag when pulled to sitting, but she would err on the side of caution and she would face him backwards. So, that is another task ...turn the car seat around.

After lots of talking and Jasz eating a snack Sherri did try to work with Jasz. She tried to just have him sit on the ball. We even had Alina come and help try to encourage him to be ok with it. That way she was involved and he really does like to do the things his sisters do. Well nothing doing. Sherri put him on the ball and he freaked out. She thinks he has a little sensory issue, which she says is not uncommon. The fact that he got so whacked out by it tells her that he can't process that feeling. she also says he likely has a sensory input issue with his feet. So whenever I bath him I am to Vigorously rub the bottoms of his feet.

We ended early today as he was completely uncooperative. She kind of warned me that she and Trina would likely have to force the issue and be the bad guys. They don't want his family to be the bad guys, so they get to take on the role. She warned me that he would be unhappy and would probably fight. I told her that was fine I know it's to help him and I would much rather they be the bad guys!!

You know I was usually pretty good with homework. If I was told to do an assignment (except for a couple of years in my life) I would do it just fine. But never did my text book cry, or try to get away from me...at least not literally. This homework is tough, because it does not just depend on me. Yes there were a few things to buy and sew. But actually implementing the tools is much different. So I get frustrated and feel like I am not doing enough. Today I nearly cried on poor Sherri and she stopped and asked me how I was feeling about my son needing all this extra help. I took a deep breath and told her, "it was an adjustment. It was hard to come to grips with at first. but I've accepted. The part I have a hard time with is 'why didn't I catch it sooner?', and I know why, but part of me wonders if he would need as much help if I had connected the dots sooner." She says, "He is still young and in an age that makes it so likely he will have good results. Yes if we had caught it 6 months ago he would be further along now. but in the scheme of his life it likely won't make a difference." It was comforting to hear her say that. But even as I type this blog tears well up. I know every day is progress, but why does my son have to hurt to get better? Why can't he just understand I'm trying to help him run like all the other kids? This is by far the hardest homework assignment of my life. And I can't take an incomplete in this course. I must see it through. And never before in my life have I wanted an A so badly.

At least I feel God's hand guiding our family. You know I realized after our pastor laid his hands on Jasz and prayed over him, miracles began to happen. Some might say they would have happened anyways, but we have been led to the people helping us all along. And those people have helped make miracles happen. And I know in time I will see the miracle of my son walking on his own. And until that time I must keep in mind that it can't happen all at once. And this time truly is special. Jasz and I will have a special bond. And I have been given the gift of seeing how many people care about us. Seeing the responses on face book and the people following this blog have really made me realize we do have a lot of support. Thank you all!!!


  1. Hang in there, Becky. To a much lesser degree I can relate...the eye patch on Nicolas. Dear God, you would think I am trying to murder him. Still, after nearly 2 years. It's so heartbreaking, but, like you, I push forward and force the issue because it DOES help and I cannot fathom taking responsibility for him not being able to drive and such because he is blind in one eye all because I couldn't take the tantrums. So, like I said, on a very small scale I can relate. You have soooo much on your plate with this one, but if anyone can do it, you can!!! Prayers coming your way as always, not only for healing for J, but for strength for you, Mama! xoxo

  2. Hey Becky,
    The pool at 5 Cities Swim in Arroyo Grande is like bathwater, and it's an indoor pool. It's near the corner of Fair Oaks and Traffic Way. Maybe you should check it out for swimming?

    Hang in there. I pray for Jasz every day. I hope all goes well, and you get to see him walk very soon.

    Lots of love,

  3. Yes Rebecca, the pool at 5 Cities Swim in AG is great! took my kids there for swim lessons, the staff there is very nice. they do offer recreation swim times too.
    Your blog about the homework made me cry too. I can only imagine, but talking about it like it is homework made perfect sense, and has given me more insight on my own family. thank you! look forward to the next week of improvements major or minor!! Yvette

  4. I know you blame yourself, but should you? you and I did catch it earlier, but your Dr said to wait and see what happens. And in most cases it works our like it should. And in his mind it was the wize thing to do - and most times it is good. So - don't blame yourself. You are doing the best, and he is still very young and getting the help he needs while he is young.

    Love you mom