School Begins!

I have been dreading the first day of school all summer. Actually, I think I've been dreading this day since Wade was born, knowing that with a disability he would be starting school at the young age of 3. But, my fears were totally in vain, and I even had to eat some words on the second day of school! When we met in May for Wade's ARD/IEP, I decided that he would only attend PPCD 3 out of 5 days. Yes, I was totally keeping my son in a bubble because of MY fears! On Tuesday morning I had to surrender my fears and tell Wade's teacher that he will be attending school four days instead of three. (She had been trying to convince me to send him all five days, and she won!) The only reason he's not going that fifth day is because he has OT/PT on Thursday mornings and speech Thursday afternoons. She was thrilled and even said, "See Wade. I told you she'd change her mind!"

So, needless to say, Wade is completely happy at school. I think it's a wonderful environment, and I feel completely comfortable leaving him there. I was amazed on Monday when we walked by the principal and she said, "Hi Wade." We have not seen this lady since May. I think he is going to make tremendous strides!

First Day of School picture


Riding to school




Saying hi to the teacher


Playing with blocks


Checking out his new friends

All in all, this has been a very positive experience. Wade was worn out on Monday and took a three hour nap. I had to wake him to go to speech. Tuesday he did well also. This morning, I think the busy week is starting to catch up to him. He was very cranky and cried when we got into the classroom. I anticipate a long nap this afternoon!

A Little of This, and A Little of That

Besides me getting used to being a stay at home mom, things have been pretty uneventful around here. Which is a good thing! So, just a few highlights from the past couple of weeks.

A few weeks ago, Jocalyn from Kendall's Hope Blog, sent me request to become a fan of 3E Love on Facebook. I immediately fell in love with the wheelchair heart symbol Stevie is promoting on his page to: "Embrace diversity. Educate your community. Empower each other. Love life." I told Curtis that if I were to ever get a tattoo, that's what I'd get. Little did I know that I would soon be at the tattoo parlor getting my very first tattoo at age 36! That was on 8/8/10. The next Sunday, 8/15/10, Curtis went back and got his tattoo. We got them in honor of Wade getting his very first wheelchair. It's amazing how powerful a symbol can be. In fact, Curtis said it best in a FB post to Stevie: "It's amazing how a symbol can help you embrace something. Our son has CP and is getting a wheelchair, we purchased his first van this week. It was a hard pill to swallow but on the other hand very exciting. Soon he will have freedom beyond his mind. This symbol has really helped me to embrace things and I was proud to get the tattoo to celebrate the beginning of a new chapter for us... It's helped me cope with things and instead of dreading the challenges I embrace them now I am forever thankful. And honored to have this symbol." So, thank you to Jocalyn for sharing this page, and thank you to Stevie and his sister for spreading the love!

My tattoo

Curtis' tattoo

Last Saturday, after much research and discussion, we finally purchased our new van. At one point, it was between a Chrysler, Honda, and Toyota. The Chrysler had the most options, the Honda had the best third row seating, and the Toyota drove the best. However, the Honda was a close second as far as driving the best. The Chrysler was just too heavy. We decided to go with the Honda, then when we got to the van shop, I decided to look into the Toyota again. They didn't have one on the lot, but could get one from Mesquite. It fit the bill and was a little cheaper than the Honda, so we decided to go with it! I'm absolutely thrilled with our decision, and I have absolutely no buyer's remorse--which is really good for me! Even though we don't have the wheelchair yet, this van has already made things so much easier! I can stand in the van and easily move from the front to the back when needed. I don't have many pictures yet, but when we get the wheelchair next Thursday, I'll get some shots.

Wade rolling into the van soon after we bought it!


In honor of Wade starting PPCD, his aunt Jordan sent him a new back pack and a few things to go inside.
 



Included with the back pack was a supply box, pencil, box of crayons and first day of school note. Typical stuff. I texted her and questioned her about the action figures and fishing lure. Her response, "Jenny. Every kid takes toys in their back pack. And the fishing lure is for show and tell." Well of course! What was I thinking??? Wade is so lucky to have such an awesome aunt who loves him so much!

I still can't believe Wade is starting school on Monday!!! Tomorrow evening is "Meet the Teacher." Stay tuned for a full report about the first day!

Highlights From the Week

We had a pretty eventful week in the Jordan household. Last Monday we were honored to be invited to the Grapevine Elks Lodge. Wade's speech therapist at Cook Children's has worked so hard to get funding in order to purchase some iPads for the clinic. The Elks Lodge came through with flying colors, and now Wade and other kiddos have access to the iPad and the communication app, proloquo2go, during therapy. Wade's super speech therapist invited us to go with her and another therapist to the Elks Lodge to express our appreciation for their generosity. Wade was a huge inspiration for Sandra to work so hard to get the iPads. We are so thankful that we have such a wonderful group of therapists at Cook's. We expressed our interest in the iPad, and Sandra took it and ran! It's so helpful that she knows how the iPad works so that we can use ours at home and follow up in therapy. We're able to bounce ideas off of each other and figure out what works best for Wade.

Wade was able to tell the Elk members Monday night "thank you" with his iPad. I heard a woman across the room say, "He's using his head!" I am so thankful that Wade was/is able to show others how innovative people with disabilities can be. Since he can't use his hands well, he uses his favorite modality--his head and mouth!


On Wednesday night, Wade decided he needed to get up at about 2:00AM and stay up until about 4:30AM. Unfortunately, Thursday morning was therapy morning, so I had to wake him up and head off to therapy. Surprisingly, he did really well. Afterward, I couldn't handle the thought of going home and listening to his crankiness that I was sure was going to follow, so we opted to meet some friends at the Fort Worth Zoo. This was Wade's first trip to the zoo, and I think he really enjoyed himself. When we approached an animal he really seemed to like, he would start kicking his legs and smile. We were only there for a couple of hours, but I ended up getting a zoo membership so we can go back anytime.




Friday, we headed out to get Wade a big boy bed!!! I have been mulling it over in my mind for quite a few months, but we just kept putting it off for one reason or another. We opted for a daybed so that it is closed in on three sides. Then, I picked up a bed rail from Babies R Us to attach to the open side. I think it's going to work out really well. Curtis and I put it together Friday night, and the new mattress was delivered on Saturday. Saturday night when I took Wade into his room to show him, his eyes lit up and he grinned so big. When I laid him down on his back, he just giggled and giggled. I took that as a sign that he loved it.
A little bit later our neighbors came over to check it out. Wade's friend Mallie climbed up with him and they had a great time cuddling and laughing together.




On Sunday after church, the same neighbors came over for hamburgers and pool time. Wade and Mallie had a great time splashing around. Later on, after naps, Wade and I headed to their house. This is where I witnessed Wade learning how to play pretend! Mallie was serving us all "tea", and we all pretended to drink. When she held the cup up to Wade's mouth, he shook his head "no" and closed his mouth. We just kept talking about how we were drinking our pretend tea and how good it was. "Yum, yum," I would say. Before too long, Wade was opening his mouth and "drinking" from the cup. It was soooo cute! Of course I didn't have my camera!




All in all, it was a pretty fabulous week. But the real beauty in all of these events is the wonderful people we have in our lives. We are so truly blessed to be working with some of the best therapists around. They all encourage Wade and teach him to overcome his obstacles. And I am so truly thankful that I have friends that include us on outings and play dates. To be honest, sometimes it is difficult to see these kids a little younger than Wade playing and talking. But then I see the smile on his face and glimmer in his eyes and thank God that we have such a network of supportive friends. It makes my heart smile when I hear the other kiddos calling his name and see them get so excited when they see him. These children do not yet know about disabilities and discrimination. Their innocence is beautiful and gives me such hope for the future.

Mommy of the Year Award

Well, that's an award that I don't think will be hanging on my wall anytime soon. The past two days have been filled with high pitched screaming from Mr. Wade. It has left me with a constant headache and a lot of doubt about my parenting skills. I can't seem to get anything right these past two days. He tells me--in his way--he wants Yo Gabba Gabbba, but I don't pick the right one. Screaming. I start making food, but I can't do it quick enough. Screaming. I figure out he wants the iPad, but he doesn't like the game I put it on. Screaming. I tell him we're going to take a bath. Screaming. I take him out of the bath. Screaming. I can't win.

I realize he is communicating, but this isn't going to work. I actually pulled the time out card today when he was screaming over the iPad. After the timer went off, I gave him the iPad back, put it on a set of flashcards, and he calmly shook his head no. So I switched to something else. This is where I have the problem. The problem isn't the screaming. It's that I know he has other ways to communicate, but he chooses to scream to get his way. I'm at a total loss. I'm going crazy. Curtis is going crazy. And poor Wade is stuck in a body knowing exactly what he wants, but can't express it correctly. I just want to cry.

New Wheels

If I've never mentioned it before, I LOVE our minivan!  It's a Toyota Sienna, and it's amazing.  It's my dream car really.  We bought it when I was pregnant with Wade.  Curtis wasn't very thrilled with the idea, but he went with it as I would be the primary driver anyway.  I think he's come to love the van as much as I do.  Well, maybe not *as* much, but pretty close.  I'm sure people thought we were jumping the gun.  Why does a family of only 3 need a minivan?  I just love the roominess of it.  I was actually visualizing many road trips to VA in said van.  And not to mention, the thing has 14 cup holders!!!  I'm big on cup holders.  In fact, I traded in a car because it didn't have amble room in the TWO cup holders!

In hindsight, the maybe premature purchase of the minivan has been a blessing.  I never imagined we would need as much room as we do for one child.   Besides being able to seat seven comfortably without having to climb over seats, it holds Wade's sit to stand and chairs and strollers all quite easily.  His adaptive stroller would almost take up the whole trunk in a standard car.  You can also load in tons of stuff from IKEA without a problem!  Gotta love stow and go seats!



Unfortunately, because of Wade's growing needs, it's almost time to upgrade to a wheelchair accessible van.  I hate saying goodbye to our wonderful, roomy van.  I thought we'd have this thing for years.  But, Wade is getting his own set of wheels--hopefully within the month--and we'll need a way to transport him and his brand new power wheelchair!  We'll loose the two captain chairs in the middle, so we'll only have the third row bench seat.  We'll also loose room in the back because the seats won't be able to fold down and the spare tire has to be stored there.  But, all in all, I'm glad there are vans modified especially for these purposes.

While we were in VA, we visited The Van House.  My dad knows the owner, so we talked to him about pros and cons of the different modifications--side entry, rear entry, power ramp, manual ramp, slide under door, etc.  Now that we're back in TX, we'll visit the local dealer here and hopefully have a new van pretty soon.  Right now we're leaning towards another Toyota--side entry, fold up power ramp.

Whew!

I finally sat down yesterday and made a very long "To Do" list.  I am happy to report that I was able to scratch through quite a few items.  I had put off making many appointments for Wade because the end of the school year was way too busy.  So, as of yesterday he now has an appointment for new AFOs, a dentist appointment, his 3 year well check, and an orthopedic appointment--having issues with his right hip.  I also requested a medical release so that he can start the Different Strokes swim program on Saturdays, and I left messages for hippotherapy and music therapy.  My shoulders feel a lot lighter now!

Wade and I are in VA visiting family.  My sister Jordan, Wade and I left TX the Sunday before last around 9:30 AM and headed for VA.  I have to say, it was a pretty pleasant experience.  It was probably the best car trip I've ever made with Wade.  We took our time and stopped about every four hours.  Then we spent the night outside of Knoxville.  We arrived at Mom and Dad's around 8:00 PM Monday night.  Here's a picture of Wade and me enjoying the beautiful view of VA.


My brother, Philip and his girlfriend, Chris arrived from Miami Thursday morning.  My other sister, Angela got married on Saturday.  It was so nice to have all the siblings together.  The only person missing was Curtis.  He couldn't get vacation until the end of the month, so he'll be flying in on Monday.  Wade was such a trooper during all of the festivites.  He was the ring bearer, and he did an excellent job.  He had so much fun watching everyone dance at the reception.  He even cut the rug a bit himself!
 
 

 

 

On Sunday, even though it was way too hot and humid, Philip, Chris, Wade and I headed for Busch Gardens.  Although we were extremely hot and sweaty, we had a good time.  Wade rode the log flume--his first "real" ride!  There was also a Sesame Street area where we were all able to cool off on the water pad.  Busch sure has changed a lot since the last time I was there.  But it's still one of the most beautiful theme parks I've ever been too.  And thanks to needed wheelchair accessiblity, we were able to go right to the front of the lines:-)
       
So, after our very busy weekend, we've just spent this week relaxing.  This is the first day this week that Wade has decided he needed a nap, so I'm enjoying some quiet time.  I haven't slept well at all since we've been here.  I toss and turn all night.  Jordan was a saint and took Wade for me this morning so I could sleep in.  I slept better from 7 AM-11 AM than I did all night!  Maybe when Curtis gets here on Monday we'll all sleep better!

Three Years Ago...

A new friend of mine sent me an email asking what happened during Wade's birth to require a helicopter ride to Cook Children's.  She didn't know if she had missed the info in my blog or if I never really wrote it.  I started this blog when Wade turned one in an effort to keep friends and family more up to date.  Since most of them knew what happened during the birth, I guess I just failed to include that portion--a very important detail!!!--in my original postings.  Now that things have settled down (i.e. I've gotten used to my new life) I'm trying to branch out and meet more people who share our daily struggles.  As a result, I'm trying to blog more to again keep family and friends up to date, but to also educate, inform and share with others what our life is really like.  So, in honor of Wade's birthday, I thought I'd do a quick recap and actually include his birth story.

Three years ago today, we recieved the official news that Wade did indeed suffer brain damage from the lack of oxygen during his traumatic birth. I can still remember the day like it was yesterday...

Rewind to Monday, May 21, 2007.  Curtis and I spent the day watching TLC which included a few episodes of A Baby Story.  I vividly remember telling Curtis that I did not want a C-section (which happened in at least one of the episodes) and him saying, "We'll do whatever we need to do."  We left for Baylor Hosptial in Irving that evening where I was scheduled to be induced.  They were to start cervadil that night, and start the pitocin the following morning.  At the time, I was 41 weeks.  I really wanted things to happen naturally, but my parents were flying in that night and the doctor said if the baby wasn't here by Friday, he would induce anyway.  In an effort to not bore you with the details, I'll just say that things that night and into the early morning were pretty uneventful.  Unknowingly, I was already having contractions when I got to the hospital.  Throughout the night though, I could feel a lot more.  I was a little naive and told the nurse that I was going to do things naturally.  She quickly informed me that the hospital wasn't really "friendly" towards natural births as far as equipment and such.  I would be hooked up to the machine so I couldn't walk through my contractions.  There weren't any birthing balls, and I couldn't take a bath even though there was a huge tub in my room.  I guess I should've looked into all of this ahead of time, but since it was my first pregnancy, I was pretty clueless on this type of thing.  Tuesday morning after I showered, I consented to some pain meds, and the doctor eventually came in and talked me into an epidural telling me, "you don't need to be a hero."  So, they gave me an epidural, my left leg kicked out, and things were pretty easy.  I slept through pretty much everything. 

The nurses assumed I would progress slowly, but by noon, I was ready to push.  The room was cleared of visitors except for Curtis and my mom.  My mom, at the very last moment, decided to stay.  (Thank you God for those extra set of eyes and ears!!!!)  I couldn't feel anything, and I remember snoring between pushes.  (The whole reason I didn't want pain meds.  I wanted to be aware of everything.)  I also remember Curtis eating a sandwich between me pushing!  Then, all of a sudden the atmosphere in the room totally changed.  Even in my groggy state I knew things had gone down hill fast.  I had a nurse up on my bed, I heard C-section, I was crying, and they wheeled me out of that room through some double doors.  In the operating room they hurriedly removed my jewelry.  The anesthesiologist was at my head repeating over and over "This isn't good.  This isn't good."  Wade was born at 2:31PM.  I asked, "Why isn't my baby crying?"--I had watched enough episodes of The Baby Story to know that he should be crying by now.  The anesthesiologist said, "It's okay.  They just have their fingers in his mouth."  What?!?!  That didn't make me feel any better!  Then I could hear them counting and "bagging" him, so I knew he wasn't breathing.  I can remember thinking, how are we going to go home without a baby and tell everyone he didn't live?  At some point, they got him stable--his apgar's were 0/3/3--and I was wheeled to recovery.

While I was in recovery, the team was prepping Wade for a helicopter transport to Cook Children's.  Because of the type of trauma, he was a candidate for a new type of treatment--full body hypothermia, aka cooling blanket.  The only hospital in the area that had this treatment for transfer patients was Cooks.  The idea of the treatment was to drop the core body temperature down for 72 hours in an attempt to stop any further damage from occurring due to the loss of oxygen.  It could not reverse any damage that had already happened, but hopefully it would stop further damage.  Although the delivery hospital and Cooks are only about 45 minutes away from each other, since it was rush hour, they opted for the helicopter transport.  I did get to see Wade for just a few minutes before they flew him away.  I also got to touch his hand, and then I didn't see him for two and a half days as we were at separate hospitals.  Over the course of the next few days, I learned that Wade had gotten "stuck" in the birth canal and the doctor tried a forcep delivery multiple times with no success.  Since then, we have also learned that the pitocin was allegedly causing me to hyperstimulate, not giving Wade enough time to recover between the contractions.

I was discharged that Friday, May 25 and went straight to Cooks.  I was not able to hold my sweet boy because he was intubated and still on the cooling blanket and had wires hooked up everywhere.  That night we went back to the hospital so we could be there when they removed him from the blanket.  That was quite the experience because right at the end, the blanket busted and water flowed everywhere!

Friday the doctors were all very positive about his prognosis. The EEG wasn't showing anymore seizure activity, and he seemed to be doing well.  They were scheduling him for an MRI as soon as possible.  Saturday morning we took our time getting to the hospital.  Mom and Dad were also flying back to VA that afternoon.  To our surprise, when we got back to the hospital, Wade was being returned from getting the MRI.  The doctor told us he had the results.  I knew in my heart of hearts that things weren't okay before he even said anything.  I asked him, "Is it good or bad?"  Dr. Nedrelow replied, "It's not good."  He said he was very surprised at the results because everything else seemed to be okay.  I don't remember much after that except to ask him to come to the waiting room so he could tell both of our parents.  Dr. Nedrelow has the best bedside manner.  He was very comforting and let all of us ask all kinds of questions.  The neurologist however, was very matter of fact and gave us worse case scenario.  According to him, Wade would be in a wheelchair for the rest of his life.  He would not walk or talk.  The area of the brain that was damaged put him at high risk for cerebral palsy, mental retardation and epilepsy.  Because I am a special education teacher, I prayed everyday for God NOT to give me a child with special needs.  I remember sobbing this to Curtis after we all left the waiting room.  But God had different plans and knew what he was doing when he led me down the path to that career.  He was preparing me for May 22, 2007.

Wade was in the NICU for 16 days.  He wowed the doctors with his improvements.  Dr. Nedrelow was off for a few days, and when he returned he was in shock.  He called me and said, "I have one word for you.  WOW!  This is a different baby than the one I left a few days ago."  I said, "Of course he is.  He's on every prayer chain across the country!"

So, in the beginning, our outlook on things was very grim.  Now, three years later, I think Wade has surpassed all of their initial expectations.  What did I learn in the process?  That most doctors are very intelligent and knowledgeable in their field.  However, they don't know everything.  They cannot predict the future or the outcomes.  While I still value their opinions, I do not put them on pedestals as the end all, be all.  They are humans.  They make mistakes.  They are NOT God.  Only He knows what's in store for us.  And while it is a very emotional and tiring road, it is full of laughter, smiles, and most of all, miracles!

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."~Jeremiah 29:11