Scary Monsters.

That is the theme of my days lately.

Not because of anything bad – just because I have a 2 year old stuck in “watch-the-same-movie-549-times-a-day-land”. And in her case, it is Monsters Inc. AKA – scary monsters. Now you know.

So besides watching that movie (“mike wikow-skee”) a LOT, and doing a lot of laundry because the older girls have finally figured out that dumping everything into the hamper is a quick way to “clean their rooms”, and in general trying to figure out if i need to wear a winter jacket or a swimsuit from one day to the next (God bless chicago weather), life is just plodding right along.

I know I will probably regret saying this by about June 18th, but I am SO GLAD school is almost over! I think its the crazy half day kindy thing that is driving me right over the edge of insanity. I mean, on top of all the other more obvious reasons. Not only are our days overly dictated by Kendall’s therapy schedule, but having to be home in time for the bus to come or get her over to the school in time, then be back home for the bus drop-off – doesn’t leave a whole lot of time to just DO anything. Add in naps for two cranky toddlers and any and all sense of “time management” goes flying out the window. I know that having four of them underfoot (well, probably more considering that there are always friends over) will get real old real fast – but right now, I am looking forward to having one long whole day stretch endlessly in front of me. We are hoping to adjust Kendall’s therapy schedule in the next week or so so that we either have more open days, or only have the crazy every-day schedule every other week.

It’s hard to find that balance – I can see the therapy all of a sudden being SO key to what she is doing and learning every day! From a gross motor standpoint, Kendall is definitely cruising right along! If she has the support of a table or a couch, she can get her crazy flamingo-bending-backwards knee joints to flip flop together enough to “walk” along the edge of things. If she has her baby stroller (it has a super wide base to walk behind, unlike kaylen’s plethora of doll strollers that are not good for supporting anything) she is off and running! Because of this, her therapist decided to try her in the reverse walker to see if that might be the support Kendall needs to be more self-sufficient in her motor skills. Kendall did well with it, but we are going to give her a few more months to see if we can build her trunk strength up a little more and help her get her own sense of stability. We still all (meaning us as her family plus her therapists, who are a little bit like extended family by this point!) notice that she has her right sided weakness, and its definitely more predominant when she is sick or just not feeling well.

It is so amazing to see what a different kid she is when she has enough energy for all systems to be functioning!  I  have been giving her some cranberry extract through both tubes to try to keep any nasty gut bugs from getting too aggressively attached to her tubes as well as to try to keep the e.coli from colonizing in her urinary tract. I have also been trying to get more free water into her gut with a few extra boluses every day in an effort to not only keep her hydrated as the seasons try to change over (again/finally), but to help her GI tract have enough water to hopefully not stop working/reverse working. And she has not needed ANY DAYTIME OXYGEN!!!!! This is huge! I have not had to call pulmo or cardio to get her started on the medicine – meaning that for RIGHT NOW at least, her heart/lungs are only working too hard when she is sick. And that she probably did have a virus of some kind on top of a little breakthru UTI a couple weeks ago, leading to the issues she was having then. The bigger ramifications of this are that she not only doesn’t need the meds right now, but that she SUCCESSFULLY fought an illness on her own without needing to be hospitalized for it for the first time in her whole life! I guess I shouldn’t gloat too much over this yet – she has done this one other time, actually, it was exactly a year ago. She had gotten another pneumonia in May (when we thought she was doing so great off of tube feeds and all her problems were behind us), and then she crashed to one of her lowest times by June 9th. We thought the pneumonia had cleared. We were wrong. BUT – she is in a much stronger place this year than she was last year.

I think she kicked it. I am so very encouraged by her progress the past few weeks! Yesterday she learned a new sign – well, she probably had learned it a few weeks ago, but she spontaneously  signed “open” to a toy that her therapist had brought, and a few hours after therapy i asked her if she wanted me to open something and she made the sign! So she now routinely signs (or CAN sign): more, please, eat, go, open and thank you. She also can SAY with relative coherence: hi (“hi daddy” is usually how she says it – of course!), mah (which is a multi-purpose word meaning more, mom, yummy, or leave me the heck alone depending on the tone and how fast she strings it together),puh (which kind of means please), and she can VERY emphatically nod her head yes, but this mostly only works when you are holding ice cream in one hand and asking if she wants a bite. Her RECEPTIVE language, however, is seemingly just booming! Receptive language means how well you can understand things, and she definitely seems to be just suddenly “waking up” to the world around her. She understands when we are going to go somewhere, seems to understand simple directions (put that down, stop pulling all the cups out of the cupboard, get that crayon out of your mouth, etc.)  For those family and friends who want to see what some of the signs look like that Kendall knows, here is the website I use to get new words for Kendall – her speech therapist uses ASL with her also. ASL Browser It is actually an awesome website, very easy to use. Just click on the first letter of the word on the bottom, and on the side you will see a list of common words. Click on one of those and a short video of the sign along with a description pops up.

So I know I am jumping all over the place here with this post – but in a nutshell, she is doing great. All of her therapists are very pleased with her progress of the last few months, and it is very apparent that their 13 months of hard work with her are definitely starting to show signs of progress! All of that to say – it is hard to just say that we want to quit therapy for the summer, because I can see Kendall making so very much progress with it all right now. I know we will find a good balance for our family though, allowing all of us to have some kind of life over the next few months without having to run here or be there for this or that therapy or appointment.

and now that it is a week later i am just going to hit post on this one and you can read more jumbly goodness in another few hours!

 

ENJOY!!!!