Tuesday, August 31, 2010

I Can't Sleep

Dear Blog,

On most days we have a very carefree, low-maintenance relationship. You require nothing of me, and quite often I reward you with just that. Most days I'm completely content with this arrangement, but tonight I can't sleep. Tonight I have a million thoughts going through my head, and the fears that I often hide behind a confident smile and a positive attitude, are starting to surface. So tonight you are more than my little corner of happy thoughts and pictures. Tonight you'll be my journal, my therapist, my place to vent and work through all the things I'm feeling at this moment.

Frustrated. Let's start there. Maddie is now 14 months old, and she is still not crawling. I don't usually talk about this stuff. I don't write about it, and I don't share it unless I'm asked. But lately I'm asked all the time. The older she gets the more questions I'm fielding. "Is she walking yet?" No. "Oh, so she's just crawling." No. And quite honestly, the questions don't bother me, so much as hearing myself answer them. It's like a daily reminder that things aren't working out quite like I'd hoped. I always knew walking would be delayed, and that my definition of walking might need revisions, but I'd always assumed she'd be crawling by now. Then there's the nursery dilemma. Do we put her with the infants because they aren't mobile, or the 1-yr. olds because they are her peers? This is an ongoing issue at church and the gym daycare...neither of which Maddie will tolerate for more than 15 minutes before I have to get her out. The only comfort I can take is in knowing that I actually am doing everything I can for her. I work with her everyday, on her tummy...and she's so close. But she's been so close for months now, and I'm just feeling frustrated. I feel like I need something to give me a second wind...some accomplishment to let me know that it's working. We had an OT evaluation last week. I was really hoping to find out if there was anything the OT could offer to help with our delay in crawling, as well as work out some feeding issues. It was super disappointing. Which brings me to my next feeling...

Angry. Why is it that some kids are able to have 5 different specialists, aquatic therapy, hippatherapy, and sensory integration...and I can't even get an OT to recommend sessions for us...at all. None. nada. So we continue with PT once a week, and I'm left feeling like we should be doing more...but helpless, because we can't. This OT is definitely spread too thin, and while I can appreciate the laws of supply and demand, when it comes to services my child may benefit from, I'm less understanding. This OT didn't buy into any of the sensory integration studies that I've been reading about. She wrote it off as hocus-pocus that hasn't really proven effective. I've got at least 4 Moms that beg to differ. Their crawling kinks were resolved shortly after this therapy, and they swear by it. So why wouldn't this OT give it a second thought? My guess is it's not her comfort zone...so where does that leave me? Well, angry I guess...at least tonight.

Scared. Of what? It's hard to say...The unknown is always scary, but for me, sometimes the known can be scary too. See I've been following a few kids that are pretty much SB rockstars, and I want so badly for their story to be our story. The problem is when I tell our PT about them, their SB level, and how they function...the look on her face is a mix of incredulity, amazement, and utter disbelief. It makes me feel that it doesn't leave much room for the possibility that our story may go so well. I want her to reaffirm my belief that this is possible. I think she's worried that I'm setting the bar too high. Lately I've been asking her some pretty tough questions about Maddie's capabilities thus far, and what it means for her future...I know there's no easy answers. I want her to say that it's completely possible that Maddie will walk unassisted, given what she's shown us so far...She tells me to take it one thing at a time, and we'll have to just wait and see what she can do. I know she's right...but I'm a control-freak by nature, and this "wait and see" goes against every single fiber of my being. I just want to know.

And let me just say, I know how sorry ths is all sounding...so Please forgive me. I know there are others much worse off than Maddie, and I am so very grateful for everything...I'm just having a moment of weakness, and I feel the need to get it off my chest. I'm sure I'll be back to rainbows and unicorns in no time...but for tonight, I can't sleep.

Monday, August 23, 2010

Go Zippers! (Part II)

Well we made it! The SBA Family Night at the Zephyrs game was Friday night, and we were thrilled to be able to go. My parents joined us, and we all had such a great time. We were amazed that our free tickets had us right behind home plate. In addition we were given "Ball Bucks" for each ticket, that covered the cost of food too...It was so neat! There were so many new faces that we had never met, and I was introduced to one family after another...Such a great experience! Madison was one of the youngest ones there, so lots of members came by to meet the "newbie." She was in great spirits...in spite of sweltering heat and humidity, she was quite the cheerleader.

Mason loved the music that blared in between batters...He would stop mid-sentence and suddenly bust a move right on the spot.

Not to be outdone, Madison had a few moves of her own.

By the bottom of the 8th, our little bug looked like she had spent the evening in the pool. She was so hot and sweaty...my poor girl. So we decided to leave a little early and watch the fireworks from the Dairy Queen across the street. After a few blizzards, some fries, and a killer firework display, we packed it up and headed back home. My little people were exhausted...but it was a great night, and I am so grateful to the SBA for putting it on. Can't wait to do it again!

Monday, August 16, 2010

Go Zippers!

So, we don't get to do too many things with our local SBA chapter, mostly because we are always busy with something else on our schedules...But we were really psyched to hear that they had purchased a block of tickets to the Zephyrs game for Friday night, and we signed up for the event. Mason had never been to a real baseball game, so I got him all pumped about it. I told him how we'd get to see "big guys" swing the bats, and hit the balls waaayyyy up in the air. I told him we'd eat popcorn, and hot dogs, and ice cream. There would be music and fireworks, and we could yell, and dance, and yell "Go Zephyrs!" He was super excited. He practiced his chant all day long...spontaneously yelling out "GOOO Zippers!" in the grocery line and at Target. He could barely stand to take his nap, but just knowing that once he woke up it would be gametime, was all that got him through.

Then I got an email. "Rain could possibly postpone tonight's game...stay tuned." Uh-oh. I looked outside. Although it had rained most of the morning, the clouds were parting, and the sun was peeking through. I felt better about things. I started to get ready, and decided not to say anything about it to Mason. Around 4 o'clock the kiddos woke up. We were leaving in an hour, so I scrambled to get them ready. I dressed all of us in matching Zephyr blue, and finished up just as Chris got home. I decided to make a call just to be safe and confirm that it was still on...and I saw the text message. "Game cancelled due to weather. " Perfect. I turned to look at my little people, decked out in navy, and practically bouncing with excitement...this sucks.

I sat down next to Mason, and explained to him that the rain had made the feild too wet to play the game tonight. He looked out at our grass and said "It's ok, it's drying...let's go!" I showed him the online pics of the feild covered with a tarp...I told him it's too slippery to play on it tonight. He thought about it for a minute then asked, "OK, can we just go watch the fireworks?" Ughh.

So seeing as we were all dressed up with no place to go...we decided to make the most of it. We met my parents for pizza and bowling. This was also a first for Mason, and as excited as I was to see him at his first baseball game...it couldn't have been more fun then watching him with those skinny legs and goofy bowling shoes, doing his happy dance every time he sent the ball rolling down the aisle. My little guy is getting big. sniff. sniff.

The rest of the weekend turned out to be really great too...more pics to come. And we'll have another try at a Zephyrs game this Friday night...so stay tuned.
Till then, "GO Zippers!"

Wednesday, August 11, 2010


It's good to be home. After a long and exhausting week in Philadelphia, we are home and things are getting back to normal. It's funny how quickly the week came and went. Plans and preparations had been in the works for months, and then suddenly it was here. And although I had high hopes of it being a little bit of a getaway, I let my nerves get the best of me, and I stayed pretty stressed until the very last test was complete. Thankfully, my stress was unnecessary. Maddie did great on all of her tests and evaluations! We still need feedback from her MRI, which we will review with our local neurosurgeon next week...but our study coordinator assured us that no news is good news, so we were glad a consultation was not required after the MRI. The only results that were slightly bittersweet were from urology. Her renal ultrasound showed no kidney damage or reflux, and the urodynamics showed that her bladder is emptying...however, since Maddie just recently had her first UTI, Dr. Carr advised that if she is to get another UTI, it is his recommendation that we begin cathing. Bummer. I had a feeling that UTI was gonna be a problem. I know that cathing is seemingly inevitable for most kids with SB, I am just hoping to put it off for as long as possible. I guess part of me is still holding on to some hope that she may be capable of potty-training one day. It's another "wait and see", and so we shall...

Mason had a great time at my parents' while we were away. We didn't want him to feel left out of anything, so we really played up the idea that this was his special week at Mimi's, with lots of treats and surprises. He totally bought it. He was super excited each day when I called him. He would tell me all the places they were going, and the things they were doing. They went to the zoo. They fed ducks and climbed trees at the park. They went to Chuck E. Cheese. They played in the water spouts at the playground. They spent a day at the pool. It was something every. single. day.

I didn't think he'd want to come home. He did. :) I think he missed us just as much as we missed him. And Man, we missed him! I held back tears when I saw those ball mobiles in the atrium at CHOP. Mason spent hours watching those things last year when Maddie was born, and the sight of them made me want him there with us.

Here he is a year ago at CHOP....Oh man, where did that little guy go?

But it was definitely for the best that he stayed here...the hospital schedule was brutal, and the hours afterwards were spent letting Maddie catch up on her naps. Not much time for anything in between...

It was great being back there...We saw old friends, and made new friends.

Jamie, our study coordinator...

And our new, dear friend, Kelly...

And things went better than I could have hoped for...but, it's still good to be home.

Tuesday, August 3, 2010


I can't believe it's already the end of Day two here at CHOP. The past two days have really been such a whirlwind, and each night I feel physically and emotionally exhausted. I didn't expect to feel this way. I knew we'd be busy with tests and meetings, but I wasn't prepared for how taxing it would be to just watch Madison go through these things again.

Yesterday was long, but she did great. We were at the hospital for 8 hours with no nap, and she still remained happy and in great spirits. Today...not so much. The MRI was this morning...and while she did ok with the fasting part of it, she really lost it with the x-rays and IV. By the time they started to sedate her, the goofy juice was useless, and she was sobbing hysterically. It was excruciating to see her like that, looking up at me to save her, and feeling helpless because I couldn't. And just when I thought it couldn't get any worse, the sedative started to take over, and it did. Watching her go from hysterics to unconscious was harder than I ever thought it would be. They wheeled her away, and I had flashbacks of the shunt experience. It was just an MRI, and I knew she was fine, but it didn't change how difficult it felt to see her go through all of it. She's been in and out of it all day. Sleeping, crying, and just plain irritated. Now she's finally down for the night, and I'm hoping she wakes up happy and back to normal tomorrow.

In the morning we will have the physical evaluation, then the renal/bladder ultrasound and VUDS in the afternoon. Another very full day, and then we head back home on Thursday. We should get plenty of feedback from the urology testing, and I am praying that it is all good news.

Though the past two days have been all business, we were able to get some fun in on Sunday with another family here for the study. Kelly underwent prenatal surgery a few weeks ago, and has been on strict bedrest since then...so we were so excited to visit her and let Madison and her little guy, Zander, have some playtime together. We had such a great time! The kids really seemed to hit it off...even sneaking a few kisses in! It was adorable, and so much fun. I enjoyed our visit so much, and I felt like we'd known each other for ages...Kelly, you have a beautiful family, and we loved hanging out with you guys! Our prayers are with you for a happy and healthy pregnancy and delivery, and I definitely look forward to keeping in touch!

How adorable is he?!

I think Maddie knew she was about to get kissed....Look at that smile!

She didn't want to miss a thing...so she kept her eyes open the whole time!

She was pretty psyched about it...and he looks proud of himself!

Yesterday, I had the pleasure of meeting another couple who is here for the study evaluation. They had heard we were here for a follow-up, and they asked if they could meet us and Madison. Oh, they reminded me so much of us at that point...scared, confused, and completely overwhelmed. I looked into her eyes, and I knew exactly what she was going through...so completely broken and torn over a little one back home and a little one on the way. Their eyes lit up when they saw Maddie. She was all smiles and giggles, clapping and waving at them. She and I both cried as we talked about our hopes and dreams for our little girls, and I assured her that I haven't given up any of my hopes and dreams for Maddie...but the fears that consumed me during the pregnancy don't keep me awake at night anymore. Once Madison was in my arms, I knew that everything would work out fine...maybe not the way I had planned, but it would still be ok, and her life will be every bit as amazing as it is in my dreams. I hope we were able to give them some peace and encouragement...They randomize tomorrow, and they are in my thoughts and prayers tonight.
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