Tuesday, February 26, 2008

I Don't Belong Here

As I watch the snow melt I always think that it is too bad the kids don't get to play in it anymore. Then is snows and I think about how much I hate being cold when I have to play in the snow. I really don't belong in Michigan.

Sunday, February 24, 2008


If you have been reading then you have probably noticed that my mom has graduated to "super mom" status. She has always been fantastic, well it was iffy for a while when I was between the ages of 14 and 18, but that may have been me. Note the MAY HAVE BEEN. She has been so wonderfully supportive to our little family and we have been so lucky to have her near by.

Recently we have been putting her to the test. With all of the doctors appointments and therapy she has spent day after day playing with my kids or at least kid so that I can be more attentive to the doctors that we are visiting. Not only is she graciously giving her time but she has brought milk when we were flat out and I had two sick kids on hand. She has come at a moments notice to help out with birthday parties and to just let me get out. She has run to the rescue when she heard the "help me" tone in my voice and has pretty much saved the sanity of our household over the last month. Add to her list of accomplishments that she has taught me how to use a pattern and walked me through making an apron for myself. I should note that she gave me the sewing machine in the first place, provided the patterns and went with me to find fabric so that she could entertain Kiera allowing me to spend some time picking out what I wanted rather than grabbing the first bolt I touched and running out the door with it. To top it off, she may have single handedly saved me from any future door solicitation.

To put it mildly, Kiera has trouble getting to sleep. This has been VERY apparent to my helpful mom. An afternoon just a couple of days ago I struggled to put Kiera down for her nap then went to pick up Ben from school. I hadn't been gone very long when an unknowing young man appeared at our door and rang the door bell. Our dog came flying past Kiera's door barking her head off, Kiera started screaming and my wonderful mom answered the door, barking mad dog in hand, by saying "You woke the baby. I'm not happy." The poor terrified man (not sure what was scarier my barking dog, my growling mom or my screaming daughter) begged many apologies and scurried back to his car. From what she tells me, the exchange may have been good enough to spread as rumor and protect us from all future bell ringing. Just in case, she put this up

Now that I have let everyone know how fantastic she has been in the last few weeks, forgive me if I just start calling her mom again. I am not a fast typer AT ALL (my niece laughs at me) so for the sake of time I will leave out the "super" and hope that you just hear it in your head before the "mom".

Thursday, February 21, 2008

On The Up Swing?

We went to the doc on Wednesday, just to (donate $20 to the till) be on the safe side and came out with...the flu. That's right, like everyone else my germ chasers caught the flu of the season. Great thing is that Kiera went to the appointment with us and is very demanding. Why is this great? Well it means that the wonderful MA and doc couldn't say no to her when she said "My turn please?" so she got a pretty thorough check with out the co-pay. Both were sating at 96, both were ear infection free and both had clear lungs. Good enough for me! And even better news, a taste of fresh air peeked Ben's drive to feel better and he is on the go again. We really lucked out on this because it was a crazy day. My wonder mom came to stay with Kiera while Ben and I headed out to my neurologist. Not sure if I have mentioned this, I have a seizure disorder. This is usually where people give me a look. No worries, I have a very controlled seizure disorder that takes me to the neurologist once a year so that I can hear about his kids. Had my reflexes tested, he looked into my eyes, asked if I had had any seizures ("Oh you would know!"), told me all about his family while not asking once about my child that is right in front of him, another co-pay and we were off. On to the Hospital for our 1st visit with a new PT. Our goal is to stretch him out of some pretty serious tightness. She took some measurements, did some muscle testing and then started into a few low key strengthening exercises. Suggested that I work on some supported long sitting. Really? He's five. That means that he has been in PT for four years and seven months. That also means that we have been fighting the "tighties" FOREVER and all you have for me is long sitting. This poor woman has no idea what she is dealing with. When I said that I was looking for help with deep stretching to avoid medication and other interventions I was actually looking for something new and aggressive. Something more than I have been doing. Yes! Please give me home work. But teach me something beyond PT 101. Enough of that rant. I will give her our three times a day routine and see what she has to add. Please, please, please be able to add something! We left the appt. and Ben walked all the way out of the hospital. It was with his walker but still! He hasn't been walking too much with this bug and he was wearing his newly cut down DAFO's. This was more than just a step forward. We watched the big trucks and cranes that are "building my new hospital"- I'm a bit sad that we have spent so much time there that we keep up with the building progress. Anyway!! He asked if he could go to school! So we went. He met with his school PT and she actually gave him a good stretch then went to school and stayed all day. I'm telling you, wonder kid. When he gets tired of being down he just picks himself up. I came home with just enough time to grab a quick bite and struggle to get Kiera to bed then I was off again to get Ben. When I got to school I was told that there had been an argument. An argument? It turns out that Ben was playing blocks with another child (his new buddy) and both said that they made a car, little friend had it, Ben took it, little friend grabbed Ben by the shoulders and pushed him down. Isn't that awesome! Seriously! I can't tell you how excited I am! First, he has a buddy. Not just someone who says Hi in passing but a little friend that takes the time to wait for Ben . So cool! Second they were playing with blocks together. Not guided, not near each other but together. Third, they were comfortable enough to argue. Ben didn't get steam rolled and little friend didn't let Ben have it because he is "entitled" just because he is not as strong. Forth, little friend treated Ben as he would have anyone else. You take my toy, I'm gonna tackle you. Little friend saw a child that took his toy. That's it. So cool.

Monday, February 18, 2008

Out Of The Blue

One minute we're healthy, the next we're not.

We woke up on Saturday planning on spending the day with friend’s oogling campers we can't afford. That’s right, we ventured out to a Camper and RV Show. Admitting that should be part of a campers 12 step program. If there is one thing that true tent campers don't want to admit to it is that they crave shelter. In years past (many, many years) Dave and I were rustic campers. Back packs, tiny gear, dehydrated food and all. Showers and potties? Those are for wimps, right? Well the last time we ventured into the great wilderness I was 12 weeks pregnant with Ben and it just wasn't as much fun being sooo out of touch with civilization. Frankly, my back hurt, I had to pee all the time and a shower would have been a really good thing. Swimming in Lake Superior (extremely cold water if you aren't familiar)to get clean, in a bathing suit not meant for a body that just looked, well, weird wasn't a lot of fun. Fast forward about a year and we had a baby on our hands that was just off oxygen and I was too worried to take him camping. Well, we have now been tent camping for the last 3 summers and realize that it may just be a good thing to get off of the ground. I can’t believe that I just spent a whole paragraph defending the thought of camping on a mattress…

That brings us to the camper show. Where Ben got sick. Yep as quick as a wink he was fine then he was white as a sheet. On the way home he coughed. A gunky, congested coughing up guck sound that took Dave and me completely by surprise because that sound usually comes after he has been sick for a while. Then Kiera coughed. And her cough was nasty too! Is this is a new kind of sick that starts half way in? So far low grade temps, lots of fatigue, decreased appetite, gunky coughs and lots of waking at night. This means that Kiera has a pretty bad attitude, Ben is a noodle and we are really tired. I'm hoping since we seem to have started in the middle that we will be out of this in no time.

Little bit of cuteness-
Kiera came "walking" into the kitchen like this saying "Look mama, I upside down."

Friday, February 15, 2008

Did I Just Do That?

This thought came racing through my head as I was sticking my tongue out at my darling two year old daughter's back. Did I just do that? How old am I that the best I can do is pull out school yard retaliation. As quickly as I thought it, I made sure that Ben wasn't witness to my bad behavior. Thankfully it was just my mom that saw me and was laughing behind her hand. It's not that she thought it was a good idea but she has spent a lot of time with us over the last few days and I think part of her couldn't blame me.

I have decided that one can only be expected to stomach so many nasty looks in one day. Kiera has mastered the "what ever” and "make me" looks as well as the "you don't know what your talking about". It would seem that she is teaching Ben the art of the look because he has some of his own now. The "Naa, I don't think I will" and "I don't even hear you" are at the top of my making-me-nuts list right now. To be honest, I don't know which one is making me crazier. Kiera for her blatant disregard for anything I say or Ben's disregard for what I say based on the fact that he knows I am busy keeping Kiera from burning down the house so it will be a while before I get back to deal with him.
the haircut

It has been a really busy two weeks with appointments ranging from surgery clinic to a haircut. By the way- if your barber seems to be acting a little kooky, smell his breath and save yourself from the wacked out haircut. Anyway, we had about 10 appointments in all plus playgroups and preschool so I have had to deal with the backlash of diverting so far off of the routine. Toss in that I feel a bit overwhelmed and it turns into bad behavior mad house, thus the tongue thing.

On the brighter side (I'll leave out the crappy stuff because I made it clear how I felt about it in the last post) we don't have to go back to surgery clinic for a year barring any changes. The surgeon feels really good about the overall results of the fundo. We did the fundo to improve and preserve lung health. So far so good on that front. We have made it through colds, sinus infections and GI bugs without pneumonia. He can burp a little and vomit if needed and the remaining reflux is being controlled with meds. So check that one off the list for now. Next, we made it to the dentist with no vomit. We did several days of story prep and oral stimulation (basically me feeling his teeth for several days and chewing on a vibrating teether). It helps that we are on the empty stomach list and had Zofran on board but who cares about the "hows"... I didn't get puked on and that is a really good thing.

We also made it to our perspective 5 and 2 year check ups with the ped. I never know what would be worse, going twice or taking both at the same time but this time my wonder mom came with us to help run interference and we all made it out in one piece. Ben is 44" tall (75%) and 39lbs (25%) so we are still long and lean. No surprise there. Kiera is 34" tall (35%) and 26lbs (35%). A bit of a surprise there. I have friends with tiny little dainty girls so I was beginning to think that Kiera was a bit of an amazon baby. Nope. Just right for her, just like my wonder mom and sister keep saying. The doc and I keep in pretty close communication about Ben but we really don't need to deal with Kiera too often. Well, except when we needed to call when she ate strange berries outside or swallowed a clippie or painted the inside of her ear with nail polish. But that is just the call-in nurse that hears all of those crazy stories. The last time I had to call there was a long pause before the nurse said "She really does have a knack for this kind of mischief, doesn't she." Anyway...The conversation regarding Kiera began with "is she putting any words together?" to which I replied "All of them." To be followed by "Really. She is conversational with strangers." By the time we left a half hour later the doctor conceded that I am a pretty busy person. Reminded me to "keep it up" and left me with the sage advice "Don't let that one get ahead of you." What I said was "I'm trying" what I wanted to do was cry "How! How do I keep ahead of her when she never stops?" But I kept it together and we had a round of stickers and happily off we went.

This was the beginning of how we spent the last two weeks. I think that living through it has earned me some tongue sticking out. Now, I am so, so tired...

Monday, February 11, 2008

Break Your Heart

We went to the physiatrist this morning. (deep breath) I have heard a lot of good and bad news over the years so I pretty much know when what a doctor tells me is off the mark. In the same respect I typically have an idea of what I am going to hear when we visit any of our 11 or so doctors and therapists. So what. It doesn't mean that I want to hear it. It doesn’t mean that anything can prepare you for hearing anything negative come out of a doctor’s mouth. Just because I know its coming doesn’t mean that I want to hear it spoken. It also doesn't mean that I will swallow it and move on. It means beginning a whole series of questions all over again. Like: why?, what went wrong?, what did I do wrong?, what didn't I do?, what should I have been doing?, who's fault is this?, how can I do more?, am I strong enough?, why can't I suffer instead of him?, will anything ever be enough? I doesn't matter that our situation hasn't changed. It doesn't matter that we will do what we have to do to move on. I doesn't matter that what is said was expected. You go right back to the beginning and start over with the doubt, guilt, blame, fear and heavy heavy sadness that once again life is not and never will be simple for a child with CP. Four months ago Ben had hypotonic cerebral palsy. Today he has spastic cerebral palsy. No big deal. We stretch him everyday. We knew it was coming. But I didn't want to hear it. I also didn't want to hear intensive intervention or Baclofen or Botox or risotomy. At the appointment today Ben said that his legs wanted to be straight. The doctor and I looked at each other and I told Ben that that is why we stretch his legs, so that they will bend easily. He said "Let’s just let them be straight Mama." He is tired of this whole thing too. At school a student assistant had a cute story to tell me. She is using crutches and was helping Ben at his locker. He said "You use something to help you walk too." She agreed and he said "Now I don't have to feel alone today." I cried all the way home.

Thursday, February 7, 2008


There are so many wonderful and fun things to post about but I am too lost in the bedtime battle to think of them! I guess the trigger to my current woes, is that Kiera started climbing out of her crib. Four weeks ago. OK, so I'm a little behind on info sharing but we've been really busy. After we mysteriously found our little mischief maker in the living room after bedtime, we began talk of what to do next. Do we try one of those crib tents? Do remember that this little girl has yet to be conquered by any puzzle that she sets her mind to so... do we spend the however may dollars on a tent? With only a zipper holding her back? In the meantime how do we saver her from herself? Well, get a gate for her door of course! So there goes a little bundle of $ on a gate that lasted about 1 minute. Really! Up an over she went and our grand plan to keep Kiera (and our house) safe was foiled. So we just keep putting her back in her crib per doctor instructions, avoiding eye contact and any speaking so as not to reinforce the behavior with attention. Then she miraculously began staying in her bed! Except that she wasn't. She was just tired of being put back in her crib and had begun making little beds for herself on the floor.On to plan, what is it now "C"? We go with the toddler bed. Bring it home, she loves it! And absolutely refuses to stay in it at bed time. For THREE WEEKS that little joker has put us through 45 minutes (at best) of using our best parenting materials to keep her in her bed. To absolutely no avail. I've got nothing folks. Help!

Tuesday, February 5, 2008

Funny Guy!

Me: Do you guys want a snack? Kids: Crabby, wine, wine, crabby, complain, wine... Me: OK, how about turkey toes? Ben: Peeyou stinky turkey toes?!? Beginning to smile Kiera: "You're Crazy" look directed at yours truely Ben: How about toegurt? I love that boy!