Saturday, March 24, 2012

Adventures in Shopping and Formula

Melissa and I decided to take Jackson and Addison (Grayson is with his dad this weekend) to the outlet malls in San Marcos. It was a beautiful Spring day and I was halfway looking for a new pair of shoes. So we set out after very carefully packing the diaper bag for a day away from the house and headed the 45 mins to the greatest outlet mall EVER.

Melissa drove us in her car which is a rarity. Normal we set out in our Endeavor because I have the carseat base and booster seat and stroller in the back and it has more room. But today Adam had taken the Endeavor to work so we decided to all pile into Melissa's VW Jetta. We had an extra booster seat for Jackson and the carseat carrier can be used without the base, and Melissa figured out how to get the giant stroller in her tiny trunk. So away we went.

We arrived around 3pm and walked all around the outlet. It was pretty crowded and pretty warm - up to 86 degrees and we were remarking here and there about how this was preparing us for our planned September trip to Disney World in Florida. Addie and Jack were both really, really good. Addison napped in her stroller as we walked in and out of store after store and Jack insisted on opening and holding all the doors open for us and the stroller.

Melissa found a great overnight bag on sale at Kate Spade and I found --what else-- more clothes for Addison! Great sales at Gymboree this time. No shoes for me though. I'll have to keep looking. Darn. ;)

Our last store stop was the Williams Sonoma - Pottery Barn Outlet. Jack was getting tired and hungry, as were we, and he was getting a little less happy to be shopping. He found a yellow spatula with a bunny rabbit on it as we were walking around Williams Sonoma and he wanted it. I looked quizzically at him, wondering what on Earth he could want with it. He informed me he wanted to pretend cook with it. And he does pretend play with Adam's cool cooking utensils all the time and then I have to re-wash them all because they've been laying on the couch for an afternoon. I thought Jack had a good idea and for $5 I said sure, you can have it. He was very happy with it and walked around the store with it, pretending to cook and serve me things as we finished up our shopping.

Well, as we wrapped back around to the front of the store and started to check out, Melissa nor I had gotten anything else and the line at the register was 10 people deep. I really didn't want to stand in line that long for a play spatula for Jackson. So I did what any good parent does in a situation like this and bribed him with ice cream. ;) ( Don't worry, I'll find an old spatula at home and designate it as his pretend play one)

We were hungry anyway and had been planning on heading to get dinner next anyway so it worked out well. We headed back to the car, loaded ourselves into the small car we aren't used to and I got on my iPhone to look up a place for dinner. We had eaten around that area several times and knew of a lot of places but none of them sounded appealing. I found a review on Yelp for a place right across the street that said they had great burgers and shakes. We had actually been in this little antique gas station looking place before because they sell Vera Bradley and I remembered thinking it smelled good in there and remarking to Melissa that I wondered what kind of restaurant it was.

We headed across the street and grabbed a booth in a corner and ordered burgers, onion rings and a vanilla shake for all three of us to share. Jack's kid meal came with an ice cream cone so SCORE on his bribe. We inhaled our food. Our hunger, having not eaten since breakfast, probably helped the food along a bit but it was all really good. Especially the onion rings! Addie had her first bites of a burger. I started out pinching off bites of meat from my burger and bread and she was gobbling them up so fast I started letting her take bites of the burger. Of course this was all closely supervised but she was really digging her first burger and did such a good job taking bites like a big girl! For a baby that only started really eating pureed baby foods a month ago, she is doing awesome in the eating department. Like I should have ever doubted that with Adam and I as parents! Addie even got upset at the hot french fry in her hand that I tried to keep away from her. You know you are a hydro parent, aware of every little potential developmental and neurological  issue, when you are relieved when your child can feel that something is hot!

We took our time eating and tried our best to clean up the mess we made of that table. Addie finally reached her fill point and I had to make Jack eat two more bites of his burger to get his ice cream cone.

We headed to the store next door... another wonderful perk of this little hole in the wall and took our time looking around, taking turns holding Addie while the other shopped around. We had left the stroller in the car as small boutique like shops aren't as stroller friendly and quickly realized how heavy she is! Finally, an hour and forty five minutes later we were ready to get Jack's free ice cream cone and head home. I picked up a few pieces of fudge that I was nice enough to share, and Jack picked out cookies and cream based on the pictures on the front of the Blue Bell ice cream cooler. Melissa had already taken Addie to the car to get her clicked back into her car seat while I paid for the fudge and Jack got started on his cone.

We made it to the car and I remembered that there was a few hours old formula in the only bottle I had brought with us so I poured it out by walking to the grassy area beside the car and chunking the formula onto the grass. I rinsed out the bottle and decided to wait to make the bottle as we were on the way home. I didn't want to waste any on the off chance that she might fall asleep without a bottle.

No sooner had we pulled onto the interstate to head back to Austin, Addie started fussing. I figured she was tired and thirsty after all the food she had inhaled. I went to fix her bottle and realized that the blue ring that goes into the bottle that stops it from leaking (gotta love the Avent style bottle that needs an extra part to stop it from leaking) was no where to be found. I realized that it must have gone flying when I was throwing out the old formula. I tried, in vain, to see if it maybe wouldn't leak that badly -- yeah right. By this time, Addison is full on crying, no longer patiently fussing for her bottle. So Melissa suggests we pull off and find another bottle. A Walgreens was found fairly quickly. I run in and try to check out quickly but get stuck behind a lady trying to explain why her purchase price should have been two dollars less than it was. I finally check out. I had grabbed a Vent Air bottle that we are using for OT to help her hold her bottle. My hope was that she would at least recognize it and I didn't want to add yet another bottle system into the mix.

I get to the car and Addie is screaming. Jack very matter of factly is saying from the backseat "Addison not happy. Addison not happy." Melissa pulled over in the Walgreens parking lot so we can get everything set up to get back on the road. I am trying to put the bottle together. I had to unscrew the bottom vent air portion to get the paper out of it and I already have some formula made up in the Avent bottle that was missing the leak stop ring. I pour the formula from the old bottle into the new bottle and Melissa points out that the new bottle is also ... now... leaking. Somehow when I had screwed the vent air thingie back on the bottom, I had not done it correctly and we had formula leaking out of the bottom. I put the old bottle under the new bottle and am sitting there watching it slowly drip as Addison is crying in the back ground and Jack is continually announcing... "Addison not happy." in his sing song way.

I try to screw the vent air thingie on tighter and I just make the leak worse. I'm not wanting to sit there and wait for the formula to leak it's way into the old bottle again so I could fix the new bottle. So I think -- ok I can just quickly turn the new bottle over and pour the formula into the old bottle, then fix the new bottle and then we'd be good to go. This was a good idea. In theory. But somehow the execution did not go according to plan.

I wish I could re-watch what happened next in slow motion. Somehow I missed the old bottle and the formula that was in the new bottle went flying everywhere. Pour is not an accurate description of what I did with the formula. I was soaked. Melissa was soaked. Her car was white with formula dripping down the window, down the seat, onto the floorboard, on the dashboard, down between the middle console and passenger seat. If you can imagine a surface that is in a front seat of a car, it was now wet with formula. Melissa is cracking up laughing. Nearly crying, she is laughing so hard and I am doing my darnedest not to curse.

I literally said -- Mother Mother BAD WORD mother bad word bad word bad word.

Yes... I said "bad word" instead of any actual bad words. I try really hard not to curse and I try even harder to not curse in front of my kids. But let me tell you, saying the words "bad word".... well it loses a bit of the cathartic value of letting a string of curse words go when one is at the end of the exasperation rope, such as I was.

And about that time, amidst the screams from the backseat,
we hear

"Addison not happy."

"What was your first clue, Jackson?" was my Mom of the Year reply.

I guess the bright side was that now that the formula had been spilled all over the car and my lap, I was able to figure out what the heck was wrong with the stupid new vent air thingie bottle and get it all fixed. I handed 4 of the original 8 ounces I had made to Jack to give Addie and we were back on the road. Wet. But back on the road.

We made it a block down the road and Jackson opened the back door of the car.

Face Palm!

We pulled back off the road and I went around to shut the back door. That's how we found out the hard way that her car doesn't have a child safety lock. Thankfully he was buckled in (always!) and thankfully we were not on the interstate, but we had to have a little talk about not pulling on door handles.

We are finally back onto the interstate and Addie had drowned her 4 ounces and was none to happy that there wasn't more to be had. So I got the bottle back from Jack and carefully made four more ounces.

After I had put the two scoops of powderd formula into the bottle, as I'm handing the bottle back to Jackson to give to his sister, I knock the ziploc bag off my lap and the powder formula has now joined into the rest of the liquid formula mess. It was now covering the contents of my purse , stuck to my wet jeans and all over Melissa's floorboard.

You cannot make this stuff up.

Jack gave Addie her bottle as I am sitting in the front seat marveling at my complete and utter slick-dom. In the course of 30 mins I had managed to lose an important piece of bottle equipment, not put together a new bottle properly, leak formula from said new bottle then pour said new bottle all over myself and the car, and then dump an entire baggie of powdered formula into my bag, my lap and onto the floor.

Slick, I tell ya.

Finally we had to pull over yet again. Addie was not happy with her next four ounces and Jack wasn't able to get her to take her paci. So I crawled into the back seat with Jack and Addie.

Addie immediately grabbed my iPhone and started chewing on it, happy as a clam, grinning at me.

"Addie happy now." Jack announces.

Melissa loses it laughing at this point and that's not exactly good driving technique on the interstate ifyaknowwhatImean! She held it together, barely!

Then Jack says...

"Mom....what did you say... Mother what??"

Ok then it was my turn to lose it laughing.

I told him I said "mother mushroom".

He thought that was the funniest thing ever. And somehow it turned from mother mushroom to muffy mushroom so now Jack's favorite 'bad word' is muffy mushroom!

Somehow we made it home in one piece. What took us 45 mins to get there took us an hour and half to get back.

And that little stinker Addison...
the sleepy miss drama queen, I want a bottle now diva?

She stayed awake the entire ride home.

Wednesday, March 21, 2012

A very important date...

March 21st.

I know now that March 21st was not the worst day of my life, nor was it the worse news one can receive, but that day, it felt like it was. Being told your unborn child has a problem... and that there is nothing we can do to help her but wait and watch. And oh by the way, we have no idea what this problem means for your daughter. It could range from way over here to way over there. Try to enjoy the rest of your pregnancy.

Yeah. Right.

My life, as dramatic as it may sound, was turned upside down that day. And to pretend otherwise would be a disservice to what I have come through and to other pregnant hydro moms that are dealing with the same feelings now.

It rocked me to the core.

The worst part for me, personally, was the not knowing. And the funny thing about that is... I never KNEW. Oh how much I assumed that I shouldn't have.

I wish I could go back and tell myself then what I know now. How wonderful she is. How much I love her for who she is. How much I would change and grow and how much my heart would expand and love. How my family would grow closer and how my marriage would ride the storm. How much sweeter my perspective on life would be and how much better of a person I would be. All of these things have grown from the worst day of my life.

With a year of perspective and hindsight, I can now see where it was also the beginning of a new journey, a new appreciation of what is important. A new hope and faith that I didn't know I needed.

For all the pregnant hydro moms that are reading this, please know that you are not alone. That you have to go through the feelings you are having now to come out on the other side. And that the other side is scary and uncertain but it's also beautiful and life altering. I would not want to go back and relive that day... just the anniversary looming on the calendar is hard. BUT I would NOT take away what that day has brought me. A better understanding, a richer appreciation, a clearer perspective.

And Addison.

My sweet babygirl that I always wanted and now have.

Hydrocephalus sucks. Life is hard. People go through unimaginable tragedies all the time. And time goes on.

I know that it is still very early on in our journey with hydrocephalus and that it is an unpredictable one. And I fully, gratefully, PRAISEingly recognize that Addison is a miracle and is doing amazingly well. And perhaps, I wouldn't feel the way I do if she wasn't. I recognize those things. And I fully and wholeheartedly appreciate EVERY single little thing she does and every day we have together.

So on this March 21st (and every other day) I choose to celebrate the gift that God has sent to us in Addison. I choose to appreciate all the ways I have changed and grown. I choose to pray and be thankful and ask for God's continued mercy and grace.

I choose to continue my life with hope and faith and love and a fervent desire to keep growing and appreciating every moment.

Every day.

Monday, March 19, 2012

March happenings

Addie's OT eval went well. It lasted three hours!! She is definitely not using her left hand as much (um I knew that!) and is weaker on her left side. We will officially be working on delay in fine motor and some sensory issues that she is right on the fence of having, mainly that she is seeking stimulation orally. We are adding a soft splint for her left hand to keep it open and to help her be more aware that she HAS a left hand. The OT recommended that I start baby massage for five minutes every night after her bath, primarily on her left side,  and  to place a small rolled wash cloth in her left hand anytime I catch her clenching her hand to keep it from clenching as tightly as it can.  The goal is that we stretch her out a little bit before the splint arrives this week so we're not stretching out her ligaments too quickly. She recommended a vibration toy for oral stim and the smaller bent bottles so e can work on holding a bottle. We are adding OT  four times a month for now. I feel good about it! Excited to work on the next thing that Addie needs!

Grayson had saved up all of his birthday money and worked really hard in the garage with Aunt Missy over spring break. So he got to go to Toys R Us and pick out a brand new bike. It's a beauty. I'll try to get a picture of him on it soon. He's been cruising around the neighborhood and is begging to go farther than what I have allowed him to go on foot. We are considering it. He's growing up!!

With the help of Melissa, we were able to get a lot done over Spring break, though it seems like we have a lot of projects that are half way done! So I need to make a list of projects so we don't forget any of them!

I am super excited to announce that we have booked a Disney trip - Addie's first trip!! YAY! Disney is such a huge part of our family and I was prepared to have to give it up if Addie's medical needs required us to not be able to travel with her. But thankfully, she is mostly stable. I saw mostly because as always with hydrocephalus her shunt can malfunction at any time. But like I have mentioned previously, Dr. George said to travel. That he knows surgeons all over and could recommend someone before we head off so we aren't stuck in a new area with no one to contact. I can't describe the feeling that comes with being able to book a trip already. That she's doing as well as she is, that she's able to travel, that are family has navigated our way through to the other side. I have a greater understanding of life and how unpredictable it truly is. And I am prepared that if something does happen that prevents us from going, then will go with the flow and reschedule or cancel. That's life. But the hope we have... that we can go again. That is a gift in and of itself.

My mom and her sister came for a visit last Friday. We enjoyed having them and they enjoyed being here (I hope!) It's always great to have family visit and the fact that it makes me clean my house is gravy! lol

Here are some pics from the last week, completely out of order because I can't get my iPhone to upload them in the order I select them but oh well!!

Addison LOVEs my laptop. To the point that she will lunge out of my arms, crawl across the flood, scale tall buildings ;) to get to it!
She got her glasses on Wednesday the 7th.
Shopping in a big girl cart around Toys R Us.
First sink bath!
Hanging out with her Bubba, rockin his hat and chewing on his dog tags!
Enjoying the beautiful weather outside in her stroller while we worked in the yard and garage.
Probably my favorite picture ever! She had her first spaghetti on March 1st and loved it!!
Standing up all by herself to get to a laptop.

Tuesday, March 6, 2012

Tubes are IN!

Addison has her tubes put in this morning. We had to be at Dell Children's at 5:45am. She was the first surgery of the day. Which was good since she had been NPO since 11:45 last night.

She handled all the pre op stuff like a pro. Everyone was saying how good she was, how alert she was. How cute she was ! :) She watched every little thing they did. I can see as she gets older how surgeries and medical things may get scarier but right now she's fine with them.

She went back right at 7 am. I walked her to the doors to the OR suites them went back to the waiting room. I had enough time to use the restroom and post on Facebook that she had gone back to the OR before they called me to the consult room to meet with Dr. Z. She said it went great and that her right ear has been relatively clear but her left was full of old nasty fluid. She called it glue. So it was a good thing we went ahead with the tubes. I went back to the waiting room and before I could update Facebook they called me to the recovery room.

She was screaming her head off as I walked in. I made her a bottle but she didn't want it. I couldn't calm her down. She was angry and half out of it. The anesthesia hadn't worn off yet.
Suddenly she belched loud enough to fill the whole room and then she was ready to drink her bottle. Lol. She rode in her stroller to the post op room. A nurse came in to go over post op instructions and then we were free to go. Fastest surgery ever! We were pulling out of the parking lot at 7:45am. Two hours from arrival. Yay!!

She slept most the way home and most of the morning. My mom stayed so I could sleep some. Thanks mom!! Adam got in from jury duty. Thankfully all the cases on the docket plea bargained so he didn't have to stay more than an hour.

We enjoyed a blissfully normal afternoon. Adam was home and Addie was feeling great, acting just like her normal happy self. It was a relatively minor surgery all things considered but I'm still glad to have it behind us!

We go to get her glasses at the end of the week! Between her glasses and newly cleaned out ears, she's not gonna know what to do! She can see and hear!

"Why are we up so early?!?" On the way to the hospital at 5:30am
Done with surgery, starving after being NPO since 11:45pm the night before

Friday, March 2, 2012

The Eyes Have It

Addie saw her ophthalmologist Wednesday. We were there for nearly an hour before Dr. R made it into the exam room. I had a mini panic attack trying to pull up the strabismus album I has created on Facebook to show Dr. R what Addie's eyes are doing. Thankfully I was able to connect to the hospitals wifi since my 3G wasn't working. I wanted to have evidence, this time, at the ready ! I had compiled 50 pics going back to one month old to show the doctor if needed.

Addie's eyes were of course lining up beautifully prior to the doctor coming into the room. Dr. R said as much. I got the pictures out to show her and just then, thankfully, Addie's left eye "popped in" for just a second and Dr. R saw it.  Dr. R spent a lot of time looking at Addie's eyes from all angles. She would turn her head to the side to see if Addie could cut her eyes and look back at her, push her head down. She moved to Addie's left then her right, had her track things, etc.   Dr. R got all excited because she couldn't figure out what was going on. Naturally my child would be the unusual diagnosis!  She mentioned a possible issue with the sixth nerve which would be a botox treatment or accommodative esotropia. She decided she wanted to dilate Addie's eyes to check her eye sight. So a nurse placed drops in and Jack, who was trying his best to be a good boy in a chair in the corner, Addie and I went downstairs to get a snack at the coffee shop and kill 20 mins.

When we got called back the second time, Addie was looking at Dr. R with both eyes, one at a time, randomly. Whew. It was a relief that Addie finally performed her eye "tricks" for the doctor.  Dr R was nearly giddy or as near to giddy as she gets. She kept saying now she's doing it with her right. Oh now her left. Dr. R explained that Addie is farsighted. Something she could tell by the way the light reflects off the back of the cornea when her eyes dilated. What Addison is doing is crossing her eyes on purpose to clear up her blurry vision (which is the accomodative estropia). Pretty amazing really. The reason Dr. R was geeking out about it was that kids don't normally start compensating for this til 2 yrs old. And Addie has figured it out at 9 mths. 6 mths really because she was doing it at Duke. Amazing!

Dr. R doesn't feel this is related to her hydro at all, though I find it hard to imagine it's totally unrelated. It isn't a muscular issue though. It's her eyesight, just like my nearsightedness. Addie's inward eye turn is the equivalent of me squinting to see far away with my glasses off. Dr. R did mention that this can be genetic. A lot of crossed eyes years and years ago were a result of someone crossing their eyes as young children to correct their vision and as they grew older, the muscles tightened from lack of use and their eyes 'got stuck'. Interestingly, my great grandmother had a crossed eye. So perhaps that is where this is coming from.

Regardless of the cause, I'm thrilled to have a plan to help Addie see better and to align her eyes before the inward turn becomes permanent. And I'm doubly thrilled that the solution (at least for now) is not surgical.

Addison is getting glasses!!

How cute she will be!!

Melissa and I are taking her today to pick out her frames! It should take about two weeks for them to come in.

Pictures to come as soon as we get them in!

Blessings ~