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Friday, July 30, 2010

The Climb

Okay so I am the first to gag when I hear the name Hannah Montana or Miley Cyrus. I am SO thankful the girls moved past her music and shows quickly. However there are just certain songs that strike you...move you...ring over and over in your head...make you tear up...and make your 1 year old dance. This song is what it feels like to be me...feels like to be my best friend...feels like to be Delaney...feels like to be Peyton...

This is a tough road to follow. Some days you really do feel like you'll never reach your goals...you feel like you're lost...you are shaken to your core and your faith is in shambles. And in those moments you just have to focus on putting one foot in front of another...nothing more. Eventually you climb the mountain and are stronger because of it.

Although our life isn't easy it is fulfilling. Every single day is a struggle in one way or another. It seems the easiest emotional days are our days spent in crisis and our hardest emotional days are our days out of immediate crisis.

I know that sometimes people in our lives have thought I was crazy or rude or controlling for the choices I have made in regards to Delaney. I can't explain why I have made the choices I made except to say that I have ALWAYS followed my mommy gut with her. And in the end that has paid off more than you could ever know. It has literally saved her life more than once. Even Jess is so in tuned to Delaney that she has that instinctual feeling too.

I just wanted to share our song...

The Climb lyrics
Songwriters: Alexander, J; Mabe, J;
I can almost see it
That dream I am dreaming
But there's a voice inside my head saying
"You'll never reach it"

Every step I'm taking
Every move I make feels
Lost with no direction
My faith is shaking

But I gotta keep trying
Gotta keep my head held high

There's always gonna be another mountain
I'm always gonna wanna make it move
Always gonna be a uphill battle
Sometimes I'm gonna have to lose

Ain't about how fast I get there
Ain't about what's waiting on the other side
It's the climb

The struggles I'm facing
The chances I'm taking
Sometimes might knock me down
But no, I'm not breaking

I may not know it
But these are the moments that
I'm gonna remember most, yeah
Just gotta keep going

And I, I got to be strong
Just keep pushing on

'Cause there's always gonna be another mountain
I'm always gonna wanna make it move
Always gonna be a uphill battle
Sometimes I'm gonna have to lose

Ain't about how fast I get there
Ain't about what's waiting on the other side
It's the climb, yeah!

There's always gonna be another mountain
I'm always gonna wanna make it move
Always gonna be an uphill battle
Somebody's gonna have to lose

Ain't about how fast I get there
Ain't about what's waiting on the other side
It's the climb, yeah!

Keep on moving, keep climbing
Keep the faith, baby
It's all about, it's all about the climb
Keep the faith, keep your faith, whoa

Thursday, July 29, 2010

Button Buddies





In case any of you were wondering where some of the money went that we raised...they went to buy these reuseable "button buddies" for her gtube. Not only are they pretty...fit for a princess...they will help her tummy from getting irritated by all the tape

If you know anyone that has a gtube consider sending them some of these! (shameless plug Delaney loves ALL of them!) The mom who runs this company has a little boy with Mitochondrial Disease. They use this to raise money for his medical bills. www.mybuttonbuddies.com I don't get anything for advertising them...however if you do order from them just let her know I sent you.

Wednesday, July 28, 2010

New videos

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Sunday, July 18, 2010

Baby girl is sick



Last night was day 3 of fevers over 103 degrees. Even on a strict regiment of tylenol/motrin every three hours, cool pedialyte via her tube, and cool cloths on her skin we were unable to get her temperature below 101. We called the on call doctor yesterday and he instructed us to go to Urgent Care at CMH South. We of course loaded her up and went. The doctor that saw us there said that she believed she had a kidney infection and possible sepsis. She wanted to run several blood tests and cultures as well as cath her to get urine for more tests. The tests came back showing she was fighting a big infection but not yet fighting sepsis. She gave her a shot of rocephin which is a big time antibiotic that lasts 24 hours. (yesterday she took her daily bactrim, her newly prescribed omnicef, and then rocephin...which makes 3 antibiotics) If Delaney is not better with no fever by tonight we have to bring her back in for more blood work and another rocephin shot.

Tuesday, July 13, 2010

Delaney is 18 months

Well she will be in two days...

A lot has happened in her little life.

In the past month she has take a 20 hour car trip to VA beach and a 20 hour car trip back to KC.

She has had a gtube placed.

She has been hospitalized for respiratory issues.

She has started saying words...mommom, Char Char, Sissssss, yeah, bu N (button), up, out, papa, shoes, and fish. Although all but the first two are pretty inconsistent.

She LOVES pretend playing with Julia.

She LOVES music.

She is still an outdoor girl.

She LOVES trying on new clothes and playing dress up.

She enjoys skyping.

She carries a purse.

She watches her Two Peas in a Pod video obsessively.

She no longer flinches or cries when her blood is drawn.

She is 20lbs even.

She is 29.5 inches tall.

She likes to clean.

She has started using her snack trap.

She loves cucumbers and fruit and enchiladas and pasta and cheese and pizza.

She does NOT like meat, carrots, peas, green beans, and broccoli.

She loves her little tykes club house

She likes swimming.

She loves dolls.

Monday, July 12, 2010

Posters




We are making posters for each girl of their experiences in VA Beach.

Virginia


We went to Virginia Sunday night of last week. We drove 4.5 hours Sunday night and then another 15.5 hours on Monday. We arrived super late but were super excited to get out of the van. The big girls did amazingly wonderful. They kept themselves busy with NO electronics. They created and read and learned. Delaney also did good. She only cried the last hour or so on and off.
Tuesday we gave and received TONS of hugs. D and I went to the pediatrician with P and K. Then we came back and just hung out and played it calm and easy. We also let the kids play in the pool out back.
Wednesday Chloe had her ear tube surgery and we went to the park for every BODY (special needs) at the beach called Grommet Island. It was amazing and all of the kids had a blast.

Thursday we went to the Francis Land house and learned about the history of the area and the house. It was really informative. When we got home all children 7 and older wrote a short paper about what they had learned. The kids played in the sprinkler and ate watermelon before bed.

Friday Char accompanied Peyton and Kate to CHKD for Peyton's upper gi and small bowel series. This process took forever. We took that time to get the house back in order, do and fold laundry, and get the little ones down for a VERY long nap. I also took Julia and Jacob to a local park to run off some energy. After we enjoyed an early dinner we went to Beach Street and the boardwalk. We ate custard and listened to live music and watched street performers. We took our shoes off and treked down to the water where we put our feet in the Atlantic. We also bought some shirts. Saturday morning we said a VERY tearful goodbye and headed to the Virginia Holocaust Museum in Richmond. It was extremely powerful and moving. It was terrifying and eye opening. You can learn about that event all you want but SEEING it shook all of us. We also got to meet the survivor that started this museum. He lived in a tunnel that his father dug when he was Julia's age. That put it into a whole new arena for the kids. After leaving the museum we headed to Glen Allen to have lunch with Tiff, Karli, and Lach. This was so much fun. Once we finished lunch they invited us to their printing company. Karli took the care and time and taught our girls the entire printing process. She also let the kids make a couple of shirts for Delaney. They picked the colors and painted the shirts all on their own. It was such an amazing learning experience. Charlotte is definitely inspired. She is now talking about wanting to go stay the summer with Aunt Kate and Uncle Andy and work for Karli and Tiff. We left there and drove to Kentucky (8 hours). Sunday we drove the remaining 9 hours.

This trip was so amazing. We met family and we met friends that we will keep our entire lives. We ALL connected to that place and those people. We have all sat and talked about our trip and everyone multiple times everyday since we left. I will be back in November with Delaney to meet my new nephew and our friend's new son. Then we are hoping our fam can travel to see us next spring....it's so hard to feel like you left a huge chunk of your heart somewhere else.

Saturday, July 3, 2010

Simply Astounding

Best friends...I remember growing up my best friend was Jessie. We had SO much fun together. We lived two houses apart. We played spies and recorded ourselves singing to the Lion King soundtrack and Travis Tritt's Ten Feet Tall and Bulletproof. I remember sleep overs and expeditions in the woods. I remember lazy summer days eating popsicles and playing in the pool. In high school I got a new best friend named Margie. We did EVERYTHING together. We played soccer every waking moment. We went to Amazon Grill once a week or more for chicken alfredo and iced tea. We drove the same model car when we both were able to drive. We slept over at her house ALL THE TIME. We visited colleges together. We shared our lives together. I've been without a best friend since I was 21. I have friends but no one that I share everything with, no one that I talk to everyday. That is until a few months ago. I met my best friend on a babycenter CP board. We were both looking for other parents with kids similar to ours except no one's kid was similar to ours. They all had spastic CP or severe hypotonic CP or whatever. When she emailed me a short blurb about her daughter Peyton I felt so connected so quickly. She was writing about MY kid. The mom and I made an instant connection. And then one day I was out walking Delaney around the neighborhood and I get a phone call from a little voice. It's Peyton telling me about her costume and just chatting away. She had taken her mom's phone and called me. These phone calls started happening regularly. And everytime she wanted to talk to DElaney. Delaney just listened to Peyton talk and then eventually started kissing the phone. Well we've been skyping together pretty much everyday for hours for about a month now. I read Peyton stories with Delaney on my lap. We turn on music and the girls get down and dance. Delaney tries to give Peyton her doll or purse or toy through the computer. Peyton tries to give me her creations through the computer. And now Delaney attempts to have Kate pick her up through the computer.

Delaney has started talking in the past month. She says Peyn, CharChar, sissis, mommom, mom, fish (fav song), shoes (loves shoes and the song), yeah, yes, up, papa, and out.

So last night Peyton went into the hospital. She was totally melting down and wanted only one person. She wanted to call Delaney, not grandma or daddy or anyone else. So she called and talked to me for a bit and then asked for DElaney. Delaney held the phone to her ear while Peyton talked to her. And all of a sudden I hear Delaney saying yeah, hmmmm, hi, pppppp, yes. She was TALKING to her best buddy on the phone. Peyton calmed down and said she could be brave now. She was playing with two My Little Ponies in the hospital and one pony told the other pony "Peyton is getting a tube in her nose today and soon will have a tube in her tummy. But no she's not afraid because DElaney has one too". So as they gave Peyton her sedative last night before inserting the tube and she got all nice and "drunk" she kept repeating "I love Delaney"

I think it's so friggin awesome that my 1 year old has a best friend and even better my best friend is her best friend's mom. And even better than that she's friends with my wife too and we're friends with her husband.

To know you are not alone in the world is the most inspiring and sustaining feeling. I have no idea how me, Jess, or Delaney would have made it through these past few months in one piece without the support from this family.

I will leave you with Delaney's first "I love you mann" drunken call from her biffer


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Friday, July 2, 2010

Things I've Learned

Being a parent in general changes your perspective on the world. Being a parent of a "special needs" child changes that perspective even further. Being a gay mom to a special needs child blows all preconceived perspective out the window. I have days of absolute joy and content amongst the stress and chaos. I also have days of bitterness and jealousy. The difference in the days seems to depend on sleep, friends, family, and the next "thing" we get to deal with. In general I have learned 10 things from my first 17 months as a mother.

10. Appearances can be deceiving. A smile slapped on my face doesn't mean nothing is bothering me. My daughter looking "normal" doesn't change how many things are not normal. Us living in a house and paying all our bills and having two cars does not mean that we can afford the insane prices for medical care (even if we traded down for shoes to walk everywhere with and a cardboard box to live in we still couldnt afford it). Just because my friends look like they have everything; healthy kid, easy conception of their second or third or forth, money to go on nice vacations, etc doesn't mean they have it easy.

9. Asking for help is essential. In the south we don't learn to ask for help we learn to offer help when we feel like someone needs it. I remember as a kid taking meals to neighbors or teacher friends of my moms because "they are having a tough time". I remember in college friends coming over to help me paint and move in to a new place and all of that without me asking...they just knew I was moving and offered to help. I'm new to the concept that you must ASK for help. That idea seems so demoralizing to me but I'm trying...and not for me. If I were asking for me it would be totally different things to help with like dinner and fun stuff like that. Instead its money for my baby so we can buy her medical stuff without having to put it off because we can't afford it.

8. Specialists are there to scare you or discredit you. Almost every specialist we have seen has done one of two things. They've either scared us half to death with the "possibilities" of this condition or that or they've completely blown us off because "she's so cute". Seriously I got to the point that I walked in and said yes I know she's cute can we move beyond that now. *Note* we did have one neurologist in St Louis make us feel amazing, however we did have to drive 4.5 hours to see the man.

7. Stopping for caffeine and chocolate after a huge appointment is essential. I'm not talking shots at the pediatrician (which I honestly used to call a "huge appointment"). I'm talking after hearing from the neurologist that your baby's brain cells didn't migrate properly or that she has epilepsy or that pudding is going into her airway or that she may have some obscure horrible genetic disorder that's only seen in .0001% of the population or the appointment that says your baby is going to surgery in just two days for a tube to help feed and hydrate her. Those are huge appointments. Those require a little caffeine and chocolate.

6. Milestones are a crock and a half. Milestones for infants are stupid. Sometime in their first 6 months they should do this or that. Well are they delayed if they do it at 7 months...of course not because there is a caveat that says +/- 3 months. I wish babycenter would not send out the emails saying your child is 43 weeks and should be doing this and that. My advice IGNORE milestone charts until they've missed the milestone by more than 6 months.

5. Figure out who to tell and who not to tell. The last thing you want to hear when you've just been told something major and you share it with someone else is that they don't agree or you are being too sensitive. Find people that will cheer you on, hug you, and pick you up. Ignore people that judge or second guess you in matters dealing with YOUR child. It's hard enough as it is to walk into a test, find out something major is wrong and that it requires surgery within a week ... oh and the surgery doesn't actually help the problem is just bypasses it.

4. Take time every single day to acknowledge all of the wonderful parts of your child and your being their mother. My kid is awesome. She is courageous and so darn cute. She can walk independently. She loves food. She plays well. She loves on her toys. She "reads" books. She gives open mouth kisses. She is starting to talk but has always communicated. She carries a purse. She puckers up for chapstick. She sits still for her nails to be painted. She is absolutely hilarious! She is well TODAY. She can walk unbraced RIGHT NOW. She is not in visible pain RIGHT NOW. She is playing by herself RIGHT NOW.

3. Don't be afraid to fight like hell, but also remember that sometimes patience and persistence are better tools. Fight for your family. Fight for your kid. Fight for your friends. Fight for your friends' kids. Know when to question a doctor. Know when to ignore a resident. Know when to demand attention. Know what information to give out and what information to withhold. Know the system. Through the battle to get Delaney the attention and care she needs Jess and I have learned the hard way what to disclose and what not to to which doctor because it changes!. We've learned when and how to be persistent. We've learned when to go around a doctor and see another one. We've also learned to research what tests are for and what possible outcomes are so when they throw out tube placement directly after a test you don't go completely nuts!

2. Find a friend or two that "gets it". I found my biffer on babycenter. Our daughters could be twins born at different times. Every. single. thing. is. the. same. They even look alike. But aside from them, K and I are also very similar. We get each other. We fight for the other. We offer advice and comfort. We put each other in check when necessary. We know when to discuss a topic and we know when to distract from a topic. We obsess and research. Together.

1. Marry a spouse that is amazing. Make sure that person is willing to not only going through all the good times and the slightly bad times, but is also willing to go through the awful and terrible and scary and painful times. My wife does that. We are not perfect. We fight and argue. We cry and scream. But through it all she is the love of my life. She is the most beautiful woman I know. She is caring beyond measure. She gets me and picks on me. She gives me long hugs when I need them. She lets me freak out. She is the biggest reason I'm not in the looney bin after the journey we've been on for the past 17 months. I love my wife and could not even imagine someone better to walk beside me than her.


While I was up for an hour and a half with Delaney last night while she screamed in pain (incision, gas, not sure) I thought about these things. I thought about the lessons I've learned. Whether your life is exactly as you planned or you've taken a little detour from the path of ideal to the path of "this works too" enjoy the journey...learn the lessons you are meant to learn. Celebrate triumphs, recognize struggles, and always surround yourself with positive (people, ideas, things) because otherwise you will go NUTS.