The Big Move

After Ainsley was born and we found she still wasn't walking by age 2 despite years of physical therapy we knew we might need to move out of our 1919 Craftsman bungalow in the city with it's many flights of stairs. When you have an old house like that there is a lot of work. With Steve's intense work schedule over the past few years home improvements had been shifted to the back burner and the house wasn't in optimal condition to sell, i.e. we had more than a few incomplete projects to finish. Still we knew it would happen eventually so we worked toward that goal, having the house painted, finishing projects, painting the kitchen floors etc. I looked at houses on the internet but not seriously or with an agent. During those years I never found a single level home for sale that I wanted to live in. The few that might be okay had stairs in places, making them less than ideal for a handicapped child.

Then in October 2010 by random chance I found it. THE PERFECT HOUSE. Steve liked it but didn't want to go look, because there was "no way we were ready". Well, we went anyway and took the attitude that we would do what we could to get our house ready to sell and if it was "meant to be, it was meant to be".  I had misgivings about certain aspects of the house especially the upkeep of the huge but beautiful yard.  Having a special needs child with medical issues doesn't leave a lot of spare time. Even with all that, somehow some way it came together. The sellers accepted a contingent offer and we hustled to get our house ready to sell in January. The process wasn't easy, but our agent Darcy LaBelle from Windermere was wonderful and worked hard behind the scenes to make it "come together" as she would say. 

After a grueling move (THE BIGGEST HUGEST THANK YOU TO ALL WHO HELPED US MOVE!!! WE LOVE YOU!) we are now settling in and loving our new home. Ainsley especially loves it here and one thing I know is if it weren't for her we would NOT be here. This process has taken a LOT of time and energy. Now that it's mostly over (of course there is still unpacking and decorating to do) I hope to post more often to the blog. Steve's work schedule has calmed down and he is now less than a 10 minute drive to work. It is great for the whole family. We are making a fresh start in many ways and I look forward to sharing it with you as we settle into the neighborhood, new schools and make new friends (while maintaining old friendships). I want to say thank you to my readers for sticking with us during this period of few posts. And thank you for caring about our sweet girl.  I've put together a slide show of the move. I hope you enjoy it. (*Remember you can click on the arrows to view it full screen.) 

Wow! A Nap CAPPED!

OMG! I had to share. Even though we are hectically packing like crazy people for the big move this news is just too big to wait! For the past year or two every few weeks or months I try to keep the cap on when Ainsley naps. Every time after about a half hour or so she wakes up. Obstructive Sleep Apnea is the term for when you obstruct, cutting off or reducing airflow, during sleep. In other words she NEEDS her trach to sleep(that is, until today). This nap was about an hour and a half long and she sleep soundly. I often take video as a means for evaluating progress. You'll see in the video that her breathing is a little loud, but it's not bad, and the more important thing is that her oxygen sats stayed up and she stayed asleep.  Interestingly today I went into an in-depth explanation of why I wanted her to wear the cap while she slept and told her I'd be listening on the baby monitor and would come take it off if she was having a hard time. I don't really think that is the reason for the difference but a part of me can't help wonder at the coincidence. Of course one little nap doesn't equal a decannulation plan, but it does hint at the possibility down the road.

Woo Hoo We're Officially Moving

I am happy to be able to say we are now OFFICIALLY moving. Yes we found the house in October, yes we got our house ready to sell by January, yes we got an offer in February but NOW we have agreed on the inspection items and have SIGNED paperwork. This means baring a catastrophe of some unexpected variety we will be moving....and soon. We are set to close at the end of March and move the first weekend in April.

I've been a very bad blogger lately, mostly I was too cheap to pay the $5 for extra photo storage so I can post pictures. Because after all what's a blog post without pictures?! So I finally decided to pay, and this time it didn't tell me I'm out of storage memory. Go figure. I'm going to need that $5 with the higher mortgage. Kidding....I hope.

We are REALLY excited. I found this rambler in October just by chance when I wasn't really looking. We were not anywhere near ready to sell our house so I think it's somewhat of a miracle that it all came together in the end because I think this house is pretty much perfect for us because of Ainsley.

• I LOVE that it is safe and accessible for Ainsley. Although she's gotten quite good at scooting up and down the stairs, now up to 5 times a day, I'll still feel better without the worry of her falling or me carrying her and falling and breaking one of our necks. 
• I'm super excited that the special ed bus can probably drive right onto our driveway.
• I also love that the driveway can be used for Ainsley's walker and the kids can ride bikes. Maybe we can even get Ainsley on a tricycle. Can you tell I LOVE the driveway?!
• And it has it's very own 3 car garage. No more sharing a driveway and garage with my next door neighbor worrying that they will come home when I have the car pulled down in front of the door to load her in.  
• I love that the kids will have a large yard to run and play in with a swing set.
• I love that Steve will massively shorten his commute (it under 10 minutes to his work) and avoid the 520 bridge tolls that are coming this spring. 
• We're moving into the best school district around.
• I love that Ainsley will have a room of her own that connects but is separate from ours so we can care for her trach at night without her having to be in our room.
• I LOVE LOVE LOVE that I'm going to have space for our stuff and won't have to have medical supplies in my coat closet in my son's bedroom.

Front.

Back.

Look at the back yard! Pinch me. I can't believe I'm going to be living here in 3 weeks and 3 days.

*********

Here's some of what Ainsley's been up to.

Standing at the sink all day because it is a place where she can pull up to a stand and hold firmly on, and it's the perfect height and very stable. 

On tip-toe workin those calves.

Seriously. All day. She loves it. But it was very gross today when I found her dipping a toy in a dirty pan and putting it in her mouth. Not the day this photo was taken, obviously. She likes to play with whatever is in the sink, and put things that don't belong, in the sink. It's great PT but I hope her fascination with the sink doesn't last too long.

Dang she's getting strong. She lifted this HEAVY diaper bag up by herself and pulled EVERYTHING out of it, including her emergency medical kit. Have I mentioned she's GETTING INTO MISCHIEF - A LOT?!

She's learned to turn the lights on and off and open doors and slam them shut, over and over, just because SHE CAN.

She TWICE ate almost an entire cup of yogurt. And topped her personal best record with 36 bites of pureed formula.

Today our medical supply company came and picked up the oxygen tanks we've had since Ainsley was born. We haven't used it in years and I'm feeling safe enough about her airway to not have it around and luckily the doctor agreed, no questions asked. That is HUGE! I am THRILLED to get this flammable stuff out of my house, car and life.  I am ready for change and that's a good thing because here comes PLENTY of it.

Ainsley's First Year

I take a lot of pictures. It's what I love to do. There is something about looking at old pictures that makes us appreciate our loved ones, and the good times more by focusing on the good instead of the bad. Looking at photos is one of my favorite things to do that I don't do often enough. On occasion, when we are not experiencing technical difficulties, we watch a slide show on the big screen in our basement which is networked to our computer(and thousands of photos). It is reminiscent of the days when people used to use projectors and do a slide show, but this is SO much better since the pictures are bright and colorful and we can even set the slideshow to have background music. I still love a good album or scrapbook, but a slideshow is also great in a different way. And I love that everyone can see so easily (no whining from the kids that they can't see).

But to have a good slideshow you need to edit your photos. Rotate the images, delete the duplicates and the ones where people's eyes are closed or you took 15 of the same shot to get that "perfect" expression or to compensate for poor lighting. And yes, I also like to removed red-eyes, adjust lighting and make other fixes. It takes time.  And it's something I am always working on, because you see, every day I take MORE pictures.

Happily I will say TODAY I finished editing the photos from Ainsley's first year. It's not that I haven't edited photos in the past 3 years, just that I found these particular photos to be difficult to work on. You see, the first year of Ainsley's life was probably the most difficult period in my life, largely because it was so difficult for her. When she was born my oldest daughter had just started Kindergarten, my son was 3 and enrolled in co-op preschool. I was already busy with the two little ones. Ainsley was hospitalized for the first 2 months of her life which meant daily trips to the hospital. At 5 weeks, after three extubation attempts she was trached. When she did come home we had to adjust to having nurses in our home to keep her safe while we slept. She had cranial reconstruction surgery at 3 months of age. She had a g-tube placed at 9 months of age.  She had a second cranial reconstruction at 9 months of age, during which they removed and reshaped her entire forehead. That surgery had a very negative impact on the appearance of her eyes which was difficult to accept (and still is). During that year she needed constant suctioning, was constantly vomiting. I had to be with her every second. She was in therapy starting at 4 months of age. All these things were hard, but I think mostly it was the grief over the change in our lives that was the hardest. That and not knowing what our future would bring. A lot of the time I just wished I was "not here". Those closest to me had no idea how hard it was and except for my pediatric trach support group I felt so alone.

I can't explain how I feel when I look at those pictures from that time, but it's saying something that I've finally healed enough to be able to view them. Near her first birthday I put together a montage of her first year. I did it by skimming her first year photos without looking too closely. This process of editing the photos required intense examination which is why it was so "uncomfortable". But it was good to be reminded that despite the pain there was a lot of happiness that year too. And it was great to see and remember how much joy she brought us (and of course still does). 

Though her first year montage is always on the Medical Page of Ainsley's blog I am going to post it again here today. Finally I can watch it without crying. I never did a second year, third, or fourth, but just maybe I'll mange to put together a "First 5 Years Montage" for when she turns 5 this coming October................................but I'd better get busy.

10 Years Of Being A Parent

I never was sure I wanted to be a parent. My mom was a single parent of three (divorced with a virtually absent father) and she always let us know it was a lot of work. (Sorry mom, but you know it's true.) I was with my husband for 8 years before we had our "oops" moment that would change my life forever. I had no idea what I was in for. Nothing can truly prepare you for becoming a parent other than doing it. (And to those who think having a dog is similar, it's not all that similar because, among other things, it is legal to lock your dog in the house with a bowl of food and LEAVE.)

I remember those early months after Evie was born. How much I loved this little person who needed me so much. But I also remember how much of a challenge I thought it all was. Never having any time for myself, no sleep, no money. I remember having to go grocery shopping and squeezing the baby carrier out of the car door, hefting it up into the cart and then having no room for groceries (for some reason mine didn't fit safely on the handles) while she cried and I felt that everyone in the store was watching me. I thought, "How do people do this?" Now I smile when I think of that. It's all about perspective I guess. Compared to my life before children it was hard. But little did I know how much harder it could become. Adding a second child. Then a third. Try grocery shopping with a 4 year old who can't walk AND a suction machine in the cart, talk about no room. Add a 7 and 9 year old who always seem to like to wrestle in the isles. Ha! That's just the example that stands out. Thankfully I do my grocery shopping while the nurse is here. There are so many ways that having three children is hard, but especially so when the demands of one are so great. I love Miss A but I'd be lying if I said it was easy.

Still I wouldn't change it for the world. They are everything to me, my three lovely children. There are so many thoughts and feelings I would like to write about in depth some day, but today I have to clean my house because I have a "showing" at 3:00.  But before I go, real quick, I just want to say, "Who is this beautiful young lady? Where is my BABY?!" She is growing up right before my eyes, and just this week started calling me "Mom" instead of  "Mommy". I'm not ready! I wish the clock could stop because I know that as hard as it is at times, these are the days we are meant to enjoy, and one day I will miss them deeply.

I am so proud of her (and all my kids).

I will leave you with a picture of the birthday girl from her party last weekend (but yes today she officially turns 10). Which was, hallelujah!, the easiest party I've ever thrown. Evie used my scrapbook software to make her own party invitation all by herself, which we then folded into origami frogs. The theme was a rainforest sleepover. She just had two friends to keep things simple (we had an open house the following day).  We made one trip to the party store. Spent an hour decorating the TV room. We ate diner at the Rainforest Cafe, had a volcano cake for desert, made pressed pennies, fed more pennies to the crocodile, bought our party favors at the gift shop.

Easy Peasy. 

Perfect.

Tonight  we'll probably have our usual family Friday pizza and a movie night (these days it is the only day of the week I can count on Steve being home for dinner.)  

And open presents, which oddly she hasn't even asked about this year.

She thinks it's her birthday, but to me it's the 10 year anniversary of becoming a mommy.

The best day of my life.

Zoo Trip, V-Day, Poop, Stairs and Stuff.

I wish I could say Valentine's Day was top on my mind but it isn't. Yesterday we had a third successful open house with lots of traffic, but yet no offers. When we put our house up for sale I knew it's issues. Mainly the lack of a third bedroom and bathroom on the upper level. And the basement ceiling height isn't ideal for very tall people. Still I didn't expect those thing to keep our house from selling, especially after reducing our price by $20,000 this week. Over all the feedback has been very positive.  I'm trying to have faith that the right buyer is out there but as the final days count down to our contingency expiring (on 2/25) I am less sure.

Still if it doesn't sell, it isn't the worst thing in the world, I keep telling myself. We do still have a house that we like. It's not like we'll be out on the street. We've finished some unfinished projects that had been driving me crazy, so that makes me happy. The worst part is that we have 3 storage boxes full of stuff that would all have to come back, and that would not be fun. 

The open house yesterday forced us out of our house, and since it was a clear winter day I thought we would head to the zoo, something I haven't done as much as I'd like these past couple years. Steve was, of course, at work. The kids and I had a great time, even though they were not feeling 100% and were tired. I took Ainsley out in her walker for about an hour so our pace was slow. I was so proud of Evie and Adrian for being patient and for how much they love their sister and show it.

Ainsley still isn't quite sure what to think of all the animals. And maybe they weren't sure about us. These miniature panda cattle were quite vocal. It was really fun for Ainsley to hear very loud cow moos. 

She actually really liked walking through the bug house. 

As usual I got tons of pictures, but will just show a few. Surprise, surprise I have just about used up all my free Blogger photo storage. A fun discovery this week.

Evie had fun pushing Ainsley in the stroller for awhile. It sure was cute, Ainsley would tip her head back and look up at Evie. I wish she could talk. I'd have loved to have known what she thought today.

I almost didn't bother to pull Ainsley out of the stroller for this shot, she was so tired, but I'm so glad I did. These moments, while ordinary at the time are so wonderful to look back on.

I was pretty happy with this one. And these taken at the end of the day before we left.

I caught Adrian kissing Ainsley. It was so sweet. I love their relationship. It's special. But he was mad at me for taking a picture, as was Evie, for catching her standing on the monkey. I think I have a picture of her doing that when she was 3. Time flies.

There have been a lot of other things happening over the last week or so.....

First #2. Hooray!

Ainsley spontaneously cleaning up a spill on the floor. Wow that impressed me. It helps that we are hiding our sponge under the sink due to it's "unsightliness" to potential buyers, making it convenient for her to get to. Not so great when, today, she decided to chew on it.  She still loves to play with the cups.

I've been considering CPAP and doing a little experimenting with where we left off prior to her December surgeries, but decided to go easy until life settles down some.

Ainsley has started drawing circular shapes. She's now giving real kisses that you can hear. She is using her voice a lot and trying to talk, though you still can't really understand the words, other than by looking at context and guessing. But it's improvement and I'll take it!

And the biggest news of all. Drumroll please........

She is now brave enough to go down stairs by herself. (Meaning when we aren't watching.)  One bump of the bottom at a time.

If this house doesn't sell fast, we might not need a rambler.

She has trouble with the angled stair, but can do it.

These are the ones that take a bit of courage.

I actually think we will miss the stairs for their PT opportunities but I think the ability for Ainsley to get where she wants safely is a fair trade. Cross your fingers for us.

Oh yeah, and Happy Valentine's Day!

Thirty One!

Okay, so maybe it's not just the strawberry Pediasure. Ainsley has been eating more over the past months. I think I've posted about this already but to recap: I started pushing oral feeding again in October when she started getting more interested in the tastes we would offer. Since then I've been offering spoonfuls with every feeding, up until she says stop. Most often she eats about 10 bites, sometimes, 20, and at a bad feeding maybe only 2.

Today she upped her personal best record of 25 by 6 and ate 31, count them THIRTY-ONE, bites of my homemade pureed formula (and really it doesn't taste that bad). AND she ate them quickly and eagerly. I can't "force" her to eat because she fatigues and is then at risk to aspirate (get the food down the wrong way into her lungs). Today when offered the Pediasure she only drank about 2 ounces but I'll keep trying it. But it appears that whatever she's eating all this extra effort is finally paying off (dare I jinx things by saying so) and her endurance is increasing. Plus hunger helps, a delayed lunch seems to get results. 

Here she is showing off!