Wednesday, October 28, 2009

Brothers - Part 2: Front Yard Fun!

There is truly nothing better than watching these boys play NICELY together.
They were having a blast running around chasing each other.


Yes, Benjamin's shirt is backwards. Most day's you will find either 1 or 2 articles of clothing backwards on Benjamin. It's his thing - he likes it and I just don't feel inclined to make a big deal out of it. The great part is that he dresses himself every day, so who am I to complain.


Funny side note: I would have NEVER let Jack go out with backwards clothes on. It's funny how your perception of what's really important changes the more kids you have. Makes me wonder what Annabelle is going to get away with :-)








I pray they will always enjoy each other's company.

Sunday, October 25, 2009

Annual Visit to the Pumpkin Patch

We decided to take our annual visit to Pa's Pumpkin Patch on Saturday. I'm sad to say it was a huge disappointment!

Was it me?
Was it the kids?
Was it the place?
Maybe it was all three.

It just wasn't what we (me especially) was expecting. Maybe it was just "too much" of some things and "way not enough" of other stuff. Branden said it had a church carnival feel and that is certainly not what we were going for. The kids were only interested in the rides - I know they are kids so that was to be expected. But at $15 for 10 tickets the boys were really made to decide how they wanted to spend their 5 tickets. It was also super crowded and because it was later in the day, I felt nervous a bit if they ran to far ahead and we couldn't see them. Speaking of running, there really wasn't much space for them to run around anyways. It just was disappointing overall. Worst of all we didn't get our usual family photo. I was super sad about this. The boys were jumping around being crazy and Annabelle was asleep on my chest in the baby bjorn - it just wasn't going to happen!

You all are probably reading this thinking "gee, Nicole haven't you been going to Pa's your whole life. What made you think it would be different this time".

Great question! The answer, unfortunately, I don't know!
I guess I wanted to be with my family somewhere that felt like Fall, especially since Saturday had been a pretty hot day. I wanted there to be lots of pumpkins, hay bails and orange and brown leaves everywhere. I wanted it to feel like Fall, like Halloween.

Needless to say, although it wasn't our most favorite adventure, the boys still had a lot of fun. As I look at the pictures I can see it in their eyes and their smiles. Just take a look.

Jack decided to go down with the lady at the top,
Brave boy Ben loved flying solo.
They both said it was super fun and wanted to go again!


Sweet Annabelle sitting with mommy waiting for her big brothers.
This was her first visit to the pumpkin patch, unfortunately she slept through most of it.


The boys looking back at the big slide they had just gone down


The pirate ship and the flying elephants


Pumpkin BEN


Pumpkin JACK

The boys went on the bumper boats for the first time


I realized later that night that I wanted our evening to be like all of the Fall pictures I've been seeing on my friends blogs that live in other parts of the country. I wanted something that I was NOT going to get at Pa's Pumpkin Patch on PCH in Long Long Beach, California.

We decided that Pa's is most likely going to become a thing of the past for us. We are going to make some new Fall traditions next year. We know this might involve driving a bit farther and making a day of it but we are committed to having more fuller experiences that involve less carnival rides and more connection with nature and the welcoming of the Fall season.

When the kids were finally in bed I was still feeling a little disappointed about how our night had gone. So I decided to take a look at the pictures from last year's trip to the pumpkin patch since I had been reflecting on it all night "as such a great visit". The funny thing is that the pictures all pretty much looked the same - same rides, very few "harvesty/pumpkin" pictures and it looked crowded as well. We did however get this family picture (below), which we weren't able to manage this year.



As I was looking at the picture so fondly I realized that I was wearing the EXACT same outfit! OMG -one year later I pull out the exact same shirt and sweater to wear to the pumpkin patch. I had to just laugh. I knew my wardrobe was lacking a bit, but that's ridiculous.

After that laugh I realized that my pouting seemed as silly as my outfit. I know that I may have wanted more from the night than I got (i.e. a family picture) but oh well. The most important thing is that we were there together as a family even if some of us are still wearing last years clothes.

I'm looking forward to creating new Fall memories in a new location in a new outfut next year!

Friday, October 23, 2009

Handmade Hats for a great cause

I have recently learned about a family that is trying to rise money ($6,000 to be exact) to help cover the costs of an international adoption. They have a website: http://savingolive.blogspot.com/ where they detail their journey of how they are desperately trying to save a little girl by the name of Olive (so cute!) from a life in an institution. Olive who was born with Down Syndrome and a heart defect.

They are making and selling some super cute hats and thought I would pass along their website just in case anyone wants to get a new hat while supporting a family that wants to help a sweet little girl.

I ordered one like this for Annabelle


I don't know this family but was touched by their story. I also think the little hats are adorable. The wife, Ashley, sent me this link when I contacted her about purchasing a hat: http://savingolive.com/

Thursday, October 22, 2009

Brothers
















BROTHERS
We run. We play.
At times, we fall down and cry.
We giggle. We snicker and play.
We poke. We pinch. All in good fun!
We even sit still, so mom can take a picture.
These are the making of childhood memories.

Thursday, October 8, 2009

Baking with the boys

Jack has been asking to bake with me for a while now and sadly I just haven't had the energy to do it. Finally, this past weekend I decided it was time to bake with the boys.

Branden took them to the grocery store to get the ingredients needed for the apple and blueberry muffins we were going to bake. I was glad that Branden was there to participate (and help). It really was a lot of fun!



We were so impressed by their teamwork


Mixing the wet ingredients with the dry ingredients


Filling the muffin cups


Sprinkling the brown sugar on top


So the muffins came out super tasty, but they didn't rise and they were a bit wet. Not sure what we did wrong. We'd love to make them again because they were yummy just not very presentable. They came out more like a tart than a muffin.

Calling all bakers: If you have any suggestions on what we should do next time so they won't be so wet, please send them our way. Thanks!

Another GREAT check up - Monday 10/5





GOOD JOB JACK!!
What a big boy you are - keep up the good brushing.

The Halloween Crafts have begun!





Benjamin was all about the glitter for his pumpkin


Jack contemplating the finishing touches on his pumpkin


The boys are very excited about Halloween this year and were ready to start decorating this weekend. They haven't decided on what they want to dress up as, but hopefully soon.

Wednesday, October 7, 2009

Cool Nurse on Wheels: Nursing with Spina Bifida and a wheelchair

A SB blogging friend of mine found this article and I wanted to share it.

Cool Nurse on Wheels: Nursing with Spina Bifida and a wheelchair


My parents were expecting to become the parents of a healthy baby girl. That turned out to not be the case.

I was born with a form of Spina Bifida called myelomeningocele. The covering of my spinal cord and the spinal nerves from L4-L5 were in a sack outside of my back, creating permanent nerve damage from the area of L4 down.


**SIDE NOTE FROM NICOLE: Annabelle's is from L5 - S1 (nerve damage from L5 down)


My family raised me with a “can do” attitude, and I was never treated any differently than the other kids in my family. This attitude shaped who I am now.

Becoming a nurse was the ultimate goal for me; and from day one, I was not going to let anyone or anything stand in my way. It’s what I was born to do.

I e-mailed several nursing schools. All of the responses were negative. Some schools even offered me free counseling to change my major.

The only school I applied to was Wright State University. I decided to disclose my Spina Bifida in the essay that I was required to submit.

I was elated when I got the letter of admittance.

The assistant dean vowed to help me. We would take it quarter by quarter, meeting prior to the start of each clinical. If it was not an essential function for nursing, then we discussed delegating the task. If I knew there was a lift or transfer that I could not perform, I asked a classmate to do it for me, promising to lend my help when he or she needed it.

I wanted to stay close to my friends and family after graduation, so I decided to look for jobs around Dayton. It was there that I got my first taste of what was to come.

I interviewed at numerous hospitals and even worked with recruiters, but I got turned down for every job. I disclosed my Spina Bifida before some interviews; for others, I did not say anything until I went into the interview room.

The excuses ranged from, “We want someone with more experience” to “You can’t possibly do nursing with a wheelchair.”

I had filled out an application for the Rehabilitation Institute of Chicago. The gentleman from human resources called me. I told him that I was interested in spinal cord injuries because of my history with Spina Bifida. He immediately asked me to come and interview.

I spent all day at RIC interviewing. I wasn’t even out of the airport parking garage when I got a phone call requesting a second interview.

I now work at RIC as a registered nurse. I use my wheelchair for long distances, but I do walk in my patients’ rooms.

My patients have been very accepting. A lot of my younger patients think it is cool that their nurse has a wheelchair just like them.

I graduated in November 2004— the proudest day of my life. As I walked across the stage, I had tears in my eyes. The biggest lesson that I have learned from this entire experience is to never let go of a dream.

Workable Wisdom

  • Be persistent. Keep looking. Don’t let failed interviews or applications keep you from what you know you can do.

  • Communicate with your superiors. Your professors and administrators can be great advocates. Get them on your side early on.

  • Keep an open mind. If you narrow your job search by location or unit, you also narrow your chances of finding a job.

Excerpt from a chapter by Marianne Haugh, RN, BSN, in “Leave No Nurse Behind: Nurses working with disAbilities” by Donna Maheady, EdD, ARNP available at

www.LeaveNoNurseBehind.com. http://leavenonursebehind.com/ Proceeds from sales of the book help to maintain www.ExceptionalNurse.com.

Photo Courtesy www.ExceptionalNurse.com

About the Author: Donna Maheady, Ed.D., ARNP is a pediatric nurse practitioner and nursing care consultant. She is a strong advocate for inclusion of nurses with disabilities in nursing practice, and has taught nursing for over 20 years and worked with nursing students with a wide range of disabilities. Donna is the founder of www.ExceptionalNurse.com, a nonprofit resource network for nurses and nursing students with disabilities.

Click here to read more on Donna Maheady.

Friday, October 2, 2009

Annabelle's Hospital Stay

What a wide range of emotions we have been through these last few days. Annabelle had her surgery Wednesday morning and thankfully it well. It was a long morning leading up to the surgery but well worth it if this shunt can be the thing to make our little girl's head feel and work better.

We arrived at the hospital at 7:30 am to start the admitting paperwork and lab tests. Poor Annabelle hadn't eaten since midnight but she was sucking away on her paci and being a good girl. I have to say that the people at Long Beach Memorial are really wonderful. I'm sure it has to be hard for anyone to be unkind to a sweet baby girl, but the kindness and compassion we have been shown at each of Annabelle's hospital stays have been truly amazing. We were put into a private room by 8:00 am and were told we could stay in there unless they got super busy and needed the room. It really was nice not having to wait to the lobby. We were able to cuddle Annabelle and try to keep her as comfortable as possible. The surgery was scheduled for 10:00, then was pushed to 10:45 but they actually took her back at 12:05. I was relatively calm until they came for her then I completely broke down. Having to hand her over to them was extremely difficult even though I knew she needed procedure done. She was crying and is just so little.

We are so grateful for our good friend Erin who so graciously brought us lunch at hospital. She showed up at a quarter to 12 so the timing was perfect. Lunch from Grounds Bakery can change anyone's mood :-) Thanks again Erin. After eating our lunch on the patio for about 20 minutes we went inside to wait for the Dr. to come out. There we sat staring at the double doors waiting for Dr. Javahery to come out and tell us that everything went well and that we could see our baby. There was so much commotion going on around us and truly I felt like I was in a trance, just sitting there waiting not caring about anything else at that moment. At times I felt sick and wanted to throw up. I think the worst part is knowing that this will not be the last time we have to do this. Shunt revisions and other corrective surgeries are very common for people living with Spina Bifida. I can't imagine this will ever get any easier.

At about 1:30 the Dr. came out and said that the surgery went well - we were SO relieved! He also said that he was glad that he did the surgery that day because the shunt was NOT working at all - so crazy! It was completely plugged and was not draining. Had we not caught this situation I can only imagine how horrible things could have gotten. They called me back into recovery about 30 minutes later. It was wonderful to see her. Her little cry was all scratchy from being intibated and all the suctioning they did, but her lips were just as beautiful as always. I was so happy and surprised to see that she was hungry and they wanted me to feed her. It felt so good to be close to her and snuggle her. I held her so tight and assured her that I would never leave her. She and I were in recovery for almost an hour. I felt bad that Branden was sitting out front not knowing what was going on. Thankfully he doesn't have as vivid of an imagination as I do and just sat patiently knowing I would be coming out soon. Then they gave him a and they took us to her room - way, way, way back in the Winter West Wing of the hospital. We had never heard of this wing, but the staff was very nice and super sweet to Annabelle.

Branden went home around 9:30 to relieve my wonderful mother who had been at our house with the boys since 6:30 am!! I know first hand how long of a day that is. THANK YOU SO MUCH MOM for being there and for taking such great care of the boys!! We are also super thankful for our wonderful neighbors The Horton's who brought over a Delicious spaghetti dinner complete with salad, bread and fruit. What a huge help!

The night unfortunately was long and difficult. Annabelle was really fussy and clearly uncomfortable. Thankfully her vitals were good so no one was overly worried, but neither of us got much sleep. I was very happy when Branden returned around 9:00am Thursday morning. Annabelle stayed fussy for much of the day but finally calmed down and finally had some restful sleep. She started eating better and was becoming herself again. Her head did unfortunately grow about 1/2 cm over night which we don't really have an explanation for - I'm thinking swelling from the incision. The doctor had recommended that she stay one more night just to be safe since she was so fussy. We agreed, but later felt that she would be better off at home because she was doing much better and (OH NO) we got a roommate - not good at all. This completely changed my attitude about staying another night. Thankfully, Dr. Javahery was later was willing to allow us to go home when he heard how well she was doing and that we felt very confident bringing him home. Guess he shouldn't have given me his cell phone number (he he)!

We arrived home at about 6:30 pm and the boys seemed super happy to see us. Coming home was definitely the best decision for the whole family. It was AMAZING how much more comfortable Annabelle seemed sleeping in her own bed, on her own sheets (made by Grammy) and in her own jammies (cute hand me downs from Rachel P) and not hospital clothes that were literally 5 times too big. She settled in rght away which gave us sometime with the boys before they had to go to bed. Since my mom fed and bathed them we were able to get cozy on the couch and watch Bugs Life with - something they have been begging to watch for a while now.

It was a great night for Annabelle. She started nursing again, something she didn't do much of in the hospital and she slept well. We couldn't be happier how the whole experience turned out. We can definitely tell that her shunt is working now but of the feel of her soft spot - it's super soft and squishy, not hard and full like it had become. We are eager to see the positive changes in Annabelle that may come from this new shunt. Since excessive sleepiness is a sign of shunt malfuntion we are expecting a more alert and wakeful little Annabelle.

We truly could not have gotten through this experience without our friends and family. All of the e-mails and text messages of encouragement really helped keep me strong. THANK YOU ALL!



Thursday, October 1, 2009

October is Spina Bifida Awareness Month!

Spina bifida is a major birth defect of a baby's spine. It is one of the most common, permanently disabling birth defects in the United States. Spina bifida occurs within the first few weeks of pregnancy, often before a woman knows she is pregnant. It happens when the spine and back bones do not close all the way. When this happens, the spinal cord and back bones do not form as they should. A sac of fluid comes through an opening in the baby's back. Much of the time, part of the spinal cord is in this sac and it is damaged.

Most children born with spina bifida live full lives, though they often have lifelong disabilities and need many surgeries. Some of the problems that a person born with spina bifida might face include:

• Not being able to move lower parts of their body. (Some might need to use crutches, braces, or wheelchairs to get around.)
• Loss of bowel and bladder control. (Some might have to wear protective clothing. Others learn new ways to empty their bladders and bowels.)
• Fluid building up and putting pressure on the brain (hydrocephalus), which needs to be fixed with an operation.
• Learning disabilities.
• Allergy to latex (a created material found in some rubber-type products such as balloons or hospital gloves).

All children born with spina bifida don't have the same needs. Some children have problems that are much more severe than others. Even so, with the right care, most of these children will grow up to lead full and productive lives.

Learn what spina bifida is, how it can be prevented, and where to find resources for those affected.

www.kystbyeverlee.com

http://www.cdc.gov/features/spinabifida/

http://www.spinabifidaassociation.org/site/c.liKWL7PLLrF/b.2642323/k.8E10/Spina_Bifida.htm