Tales from the homefront

Hello friends and family! Please pray for our friend Cameron (see the link to her blog on our blog's main page) who just had a hemispherectomy at Johns Hopkins on Thursday June 14th. She is doing well and continues in recovery. They are good friend and we are pulling for Cameron and praying for strength for all of them.

As you can see, I am back on blogger. Long story, but I hope this will work better this time around. We'll see. In any event, just keep checking in from the blog link on Avery's website, where I will be sure keep the link to the blog site current.

We are very busy here at the Paauwe household. As you can see from these pics, Avery is tolerating her therapy both at home and at Methodist Hospital. The pics of her in the balls are from the sensory therapy session she had last Thursday (we attend this on Thurs. mornings at Methodist's Outpatient Peds. Rehab facility). We enjoy our time there each week. She seems to enjoy the swinging that she gets to do with me (it can leave me feeling pretty loopy though!) there as well. And we love our therapist Carol. She has been so great and helpful to us both. As part of her sensory program, we are doing massage and brushing (of the legs, arm and back) to help with body awareness and sensory processing. She tolerates this well most of the time. We will be adding new fun things soon. The other pic is from Avery's vision therapy that she receives thru First Steps at home. Her therapist Lisa is especially great with her and has helped us SO much as far as vision is concerned. Thanks to her, Avery is making some strides and we finally feel confident that she has vision...YEAH...what a relief that is! In that pic, Lisa is trying to get her to focus on the frog maraca and hold it (tying the tactile with the visual, which is a more progressive skill). Overall, all therapies are going well and we feel so fortunate to have a whole team of therapists that are willing to work together and share responsibilities where needed. They are God's blessings to Avery I am sure. And, I as her mother, am absolutely ecstatic that they all care about her and her development so much. They are fantastic with her and to her (and to us!). Currently, Avery continues to work on head control. She IS making progress each week with that. I am confident that it will happen in the next few months. She tries to pull it up even when she is lying down these days and can hold it sustained in sitting for 20-30 seconds at a time. She can also bring it back forwards without assistance from a dropped back position....that is a big change from before. Overall, she is just getting better and stronger, even with her trunk. And, she loves to lie on her back and kick her legs. She gets going so fast that she will work herself up and then crack up laughing. It is the absolute cutest thing to see! She has also managed to get from her back into a left-side lying position all by herself. She even gets the right arm up and over and out in front of her...which is a big deal given that the right side is her weak side, especially the arm! We are so excited about that. Now she is working on getting all the way to her stomach to her back...which she can almost do (inconsistently though) . She has trouble getting completely turned over the shoulder that she is lying on when doing the roll. We also recently completed another swallow study (the first post-surgery) and was given the good news that she handled both liquid and baby food carrots well, though there were only a few instances of each tried for the study. While Avery may well be able to swallow safely, from liquids up to thick purees, she does have oral aversion/defensiveness. We are working on that now too...trying to work on decreasing that aversion through tastes and bites and other oral motor stimulation. Time will tell, but I am hopeful. We just have to keep playing the cat and mouse game with it. Too much exposure when she is crying or being defensive can make her more averted to things in her mouth, but too little exposure can do the same. So, we very much walk a thin line and it can change daily! But, we are happy to have the clearance to focus on this more and we are starting speech therapy at Methodist to address these feeding issues. Given all this I've mentioned here, we really feel like brighter days are ahead and more goals are attainable for her. She continues to interact, smiling and giggling with us every day.

We do continue to struggle with constipation, though we are trying to work on that. Citrucel is the latest thing we have started. Hopefully it will make a difference. She absolutely hates to have a BM! She will stiffen and scream through it. I used to think she was struggling that hard to move it, but I actually think she is struggling to keep it in! Anyway, this seems to be a pretty common problem with hemi kids. It is amazing to me just how much we keep figuring out that these kids have in common post-hemi...that it those things beyond the obvious.

Caiden finished Kindergarten and is set to move to 1st grade in the Fall. I am excited for him for that. He attends an Indianapolis Public School, but it is one of their magnet schools and it runs a Montessori program. So, next year, he will be in class with 2nd and 3rd graders, as well as other 1st graders. I think this will do him well. He is drawn to kids a bot older than him and is working at a higher level in math. I think having older kids doing more challenging materials will challenge him more and help him to be more confident in what he is doing. He is very bright, but he wants to do things perfectly the very first time and he wants to be right (and yeah, I know who that sounds like!). For now though, we are enjoying our time together this summer. It is nice to have him home with me and Avery again during the day...even if it does make things just a bit more difficult. He is excited about the prospect of getting to get into that ball pit with Sissy on one of our next sensory therapy sessions. He did great being there with us last week. I have to remember to take the time to stop and appreciate the time I get with the both of them together outside of the house.

We just enjoyed a great visit with Jon's parents. They arrived Friday before last in the RV. Mom P. flew back home this past Sat. to return to work. Dad is heading on today in the RV on his way to do some visiting in Michigan. They both came up to visit and to help get the garage roofed and resided. Jon, Dad P., and Mom P. worked hard on that project and we are so thankful for the time we had with them and for their willingness to spend it working to help us in any way possible. Jon, Dad P., I and the kids enjoyed a nice dinner at the Macaroni Grill last night for Father's Day.

We had decided to do the roof ourselves a few months back and save a bit of money from our hail loss on it back in April 2006. Insurance paid to have both the house and garage done. We hired out the house roof and gutters, but opted to do the garage ourselves. That allowed us to be able to re-side it at the same time using the insurance money we were able to save by doing so. It looks SOOOO much better. That old, defective Louisiana Pacific siding was looking worse and worse each day! (And don't even get me started on LP for their getting out of paying any restitution for this faulty product!). Of course the job turned out to be a bit bigger than anticipated (as usual - are there ever construction projects that don't have cost overruns?). Turns out we had some active termites on the garage...even though we pay every year for the company that treated the garage and house back in 1993 to come and inspect and to retreat if needed and thus maintain the 15 year warranty on the original treatment. Turns out, the warranty is pretty much worthless, as it does not hold them liable for any structural damage to the garage or house due to termites. Even after they were just out here for an inspection a couple months back and said that everything was fine. So, $70 a year for a warranty inspection and they have no liability, except to retreat (which would cost about $550 to have done and for which they still have no structural liability following). What a racket, eh? For all I know, they came and injected water into the ground around the garage...without any liability, what would behoove them to do anything else? Honesty maybe...hopefully.

Well, I am sure that I left out plenty, but I will save it for another day.

Happy Belated Father's Day to all father's reading this. Thanks to all of you for your continued support and concern. We appreciate it all so much! And thanks for continuing to tolerate my bouncing from blog site to blog site, back to blog site. Here's hoping this one sticks this time.

Blessings to you and yours,

Holly

Don't forget to check out http://www.paauweclan.smugmug.com/ for recent pics. I have added some from Caiden's class zoo trip and a few of Avery. I have lots more to add soon of our time with Mom and Dad P. and some of just the kids taken in the past few days.