Aug 14, 2013

Dog Days of Summer

Sorry for my downer of a post last week. I've picked myself up by my bootstraps and things are okay. It's hard to explain what goes on in the head and heart of a parent of a medically complex special needs child. If you are one I don't need to explain and if you aren't it's probably not worth trying. The only way to truly understand it is to do it day after day, year after year. Reading Welcome To Holland will give a person a sense. It's eloquently put, but some days something will happen and suddenly we just can't look at another f'ing tulip!!!! 

In this case the "something" was having another unenlightening appointment with a specialist who couldn't really help and offered well-meant but unhelpful suggestions like getting a power wheelchair and working with a not-so-helpful dietitian ( if they can come help me day to day and make adjustments every time Ainsley doesn't eat what I serve her and things like that then maybe...).  Really they can't help it. Doctors are people not Gods. They want to help but there are times that they really can't.

The next day we had our orthopedics appointment and though he said there is nothing that can be done for the lack of tissue under her massive thigh scars, and he can't tell me how tall she might be (my guess is super tall, she's already 4'1" and I'm worried), and that he doesn't think orthotics will help her....he WAS able to confirm that the hip surgery results were good and her hips still look good, again he confirmed her knees are not deformed she's just knobby kneed from being kinda skinny AND he doesn't think there is any reason to worry about her back. So we don't see him for 2 years! WooHoo! The only reason her back came up is that Mild Scoliosis was mentioned in a report by a doctor last fall. I believed it was an error. If she really had Scoliosis the billions of doctors we see would have mentioned it, right? And we should have had an x-ray for a baseline, since an x-ray is the only way to diagnose Scoliosis for sure. He said we didn't need one and we didn't need to worry. Yay! We really don't need to be adding more diagnosis that we don't actually have thank-you-very-much. I was very happy to inform the physical therapist at hippotherapy today.

We've been working a ton on oral feeding and that always puts me a little on edge. It's exhausting and the truth is I'm a bit resentful of the hours it takes from my days. But then if we want her to eat then that's what it will take. Many times I just want to give up and feed her the cans of formula. But if I do then we will be stuck doing that for the rest of her life. Sometimes the bitter truth is there is NO EASY WAY out.

Usually what makes me feel better when I'm feeling overloaded is to just love my child. Some snuggles with Ainsley helps bring me out of my head and into the present. That and a good night's sleep, and maybe a good cry, make a world of difference.

And then there are the inchstones that come and must be celebrated.  Every. Little. Victory. That's what keeps me going. This week Ainsley ate small plates of table food. Sometimes I had to place the food between her molars. If I leave the table she just simply sits there and doesn't eat. But if I help she will do it. What she couldn't finish I pureed into a textured puree and she was able to eat it (in the past it always had to be perfectly smooth).  Yes we have to supplement with formula. Yes the amount of work it is gives me doubts. But she is EATING. Real FOOD.

It's a BIG deal. She's made so much progress! Look how proud she is!
This week: scrambled eggs & toast, crepes, pizza, spaghetti & meatballs, chicken breast and vegetables, peaches, mac-n-cheese, spinach & pesto tortellini with chicken.
I am worried though what will happen when the school year starts in September. She (and we) can't spend this much time eating. That and usually cold and flu season bring her feeding progress to a grinding halt. But maybe this time will be different and it won't all be for naught. 
Then on another front the PT exercises we've been doing (squats, alternating standing for 3 seconds on each foot, and clam shells as well as the usual stretches) have bulked up her legs and she's growing a little butt. Spending a lot of time standing around the pool helps too. She's STRONGER. In the past couple days twice she was able to get on and off the toilet BY HERSELF. Yes she needed help getting her pants back on but still this is AMAZING! It gives us hope that some day she might be able to do it herself. IMAGINE THAT?!
See this?! That is Steve doing Ainsley's exercises. I can count the number of times he's them on one hand but maybe that's finally going to change. He's also been helping with her oral feeding. Maybe the communication device next? Writing skills? ABC's and 123's? Medical supply orders? Appointment and surgery scheduling? etc. Okay probably not. But I am thankfully to have more help and hope there will be more to come now that he's home regularly in the evenings and weekends for a couple months.
Remember I said we were working hard on the home front?
We paid big bucks to have 2 huge diseased trees removed plus another biggy, 6 small ones that were badly placed as well as a little clean-up in the neighbors yard (dead wood we were tired of looking at but that was just a small part of the work). Now we have a giant hole. I didn't expect the area to be so barren. And now we can see the neighbors house (we're a little spoiled with the amount of privacy we have had). It will need re-landscaping. Some days I really just wish I had an apartment.
We do now have a nice view of the neighbor majestic maple tree.
Hopefully we'll get a bit more sun in our yard. It's so shady.  
Adrian was EXTREMELY upset that we killed LIVING THINGS.
I felt awful.
  But see the rot? It had to be done. We don't want the disease to spread, or the trees to fall. We wanted the wood (evidence) gone. The guys that were lined up to take it couldn't fit it all in their trailer so this much is left and we have to arrange a second pick-up this week. Luckily Adiran seems to be over it now.

Our iron furniture has been leaving rust rings on the patio. We needed to paint it and put new caps on the feet before the rain comes or go yet another year without it getting done. What a lot of work in the hottest days of summer!!! My arm was sore from so much spraying! But they look good. After washing the cushions I feel like we got new furniture.
Let this serve as a warning not to spray paint in bare feet.

Steve's sisters came for dinner and to meet Penny. I decided that despite my proclivity to throwing crazy parties it was a little ridiculous to throw a "Meet Penny Party".  My imagination could really get the better of me on that one. So if you want to meet Penny you'll have to come visit.
That night Steve decided for some weird reason to teach the kids to play blackjack. I think the girls were more interested in arranging the chips for display. It was a fun night. Steve did the cooking so I got to relax and it was nice!
We got the pool out last week and repaired it so we could set it up and enjoy it during the dog days of summer in August.
Speaking of dogs. We found out while the kids were at camp that Penny had worms and despite being "pee-pad trained" she failed to poop or pee on the pads. We got a de-worming pill from the vet and she's now worm free and due for a booster on Thursday.  She's still having accidents in the house but things are improving so I'm happier now that there are no worm filled gifts left on the carpet. (Thank God for my carpet cleaner!) Plus Adrian home from camp to care for her and that makes me happy too. She got in the pool with the kids but it's not her favorite. Every day I think she's bigger but then I realize it's just fluff (hair).
She does love laying in the plant beds. And digging in the dirt. Thankfully I've stopped her from using the plant bed by the backdoor as her "litterbox". Lucky thing she's so cute.
Having a puppy is a lot of work. Adrian is learning this the hard way.
Penny has started to play fetch with a ball or her starfish "frisbee", which is fun. She's really a pretty smart dog and I think she will be perfect for us. Unfortunately even though she's a Doodle (Aussiedoodle) I'm still allergic, but it's tolerable. I say, as I sit itchy at the computer because Penny loves to lay under the desk. Such is the price for love.
Speaking of love. How do you feel about doggy kisses?
 Tell me in the comments. I really want to know.
Earlier in the week Evie asked to make crepes for breakfast. She mixed the batter and I poured. I remember loving crepes at her age and trying to make them. Full circle. Wow she's growing up! As a sibling she's really stepped up to help with Ainsley. I'm so proud of her and the young lady she's becoming! 

Today we made peach smoothies (TJ's had the BEST peaches I've ever had in my life this year, $5 for a box of 12). And since it was a therapy night we had a salad for dinner afterward since it's quick. Yum!
I love this time of year, when we can sit outside and eat meals on the patio!
Over the weekend we cleaned out the kennel (and sold it today for $150). I washed down tons of stuff to sell and give away on Craigslist. I am a bit of an environmentalist and I'm going to step up on my soapbox for a minute to urge you to RETHINK throwing things away. Even things you think nobody would possibly want. We had a big rusty metal shelving unit. One shelf was rusted through but within an hour of posting a listing on Craiglist a couple came and picked it up to use in their shop (probably after removing the bad shelf).
We also got rid of a weed wacker with a broken fuel line (that went in minutes), a heavy duty garbage can with a broken handle (one was good). 
Plus I love seeing someone be happy to get something they can use, for FREE.
Also you'd be surprised what people will buy. Even better than cash in your pocket is getting rid of the clutter!
We have almost 3 weeks of summer left. It stinks to spend it cleaning and organizing but I'd like to get some outdoor things done before the rain comes. We also have a few fun things we plan to squeeze in before school starts. It's tough to juggle everything don't you think? I hope things are going well for those of you who are already headed back to school.
We are still waiting for our Blue Lily photos. Don't worry, I'll be sure to share when they come.

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