Pictures full of love

Being away from our boys when Annabelle is in the hospital is very difficult. Clearly it's not that "break" we sometimes want or need. However, knowing they are with my Mom makes it so much easier. Thank you Mom!

We received these picture texts from the boys yesterday when we were at the hospital.

Jack's picture

Benjamin's picture

Those boys sure know how to make us smile!

List of books worth checking out

List of books where people with disabilities are shown in a positive light

Here is a list of books for elementary school that have at least one character with a disability. All of the characters with disabilities are portrayed in a positive light.

There are characters who have autism, down syndrome, intellectual disabilities, visual impairments, hearing impairments, speech delays, dyslexia, spina bifida, synesthesia and who use a wheelchair. The list was created using the winners of the Dolly Gray Award and the Schneider Family Book Award and lists compiled by Sandy Lahmann, Cherl Pesto at Disaboom and Mary Anne Prater & Tina Taylor Dyches from Teaching Exceptional Children.

* Very Special Critter, Mercer Mayer–Little Critter discovers that the new boy in class is really not so different from anyone else, even though he is in a wheelchair.

* My Friend Isabelle, Eliza Woloson–A young boy the activities he shares with his friend Isabelle, a girl with Down Syndrome.

* Susan Laughs, Jeanne Willis /Tony Ross–Rhyming couplets describe a wide range of common emotions and activities experienced by a girl who uses a wheelchair.

* Harry and Willy and Carrothead, Judith Casely–Three boys overcome prejudicial ideas about appearances and become friends.

* Hooway for Wodney Wat, Helen Lester /Lynn Munsinger–Classmates make fun of Rodney because he can’t pronounce his name, but it is Rodney’s speech impediment that drives away the class bully.

* Dad and Me in the Morning, Patricia Lakin–A deaf boy and his father share a special time as they watch the sun rise at the beach.

* Best Friend on Wheels, Debra Shirley–The narrator meets Sarah, a girl in a wheelchair, and they become fast friends.

* Kami and the Yaks, Andrea Stenn Stryer–Kami, a young Sherpa boy who is deaf, rescues his family?s yaks and livelihood during a violent storm.

* The Deaf Musicians, Pete Seeger /Paul Dubois Jacobs–After losing his hearing, jazzman Lee learns to make music in a new way.

* Looking out for Sarah, Glenna Lang–Describes a day in the life of a seeing eye dog, from going with his owner to the grocery store and post office, to visiting a class of school children, and playing ball

* Piano Starts Here: The Young Art Tatum, Robert A. Parker–Tatum came from modest beginnings and was nearly blind, his passion for the piano and his acute memory for any sound drove him to become a virtuoso who was revered by both classical and jazz pianists.

* Alphabet War, Diane Burton Robb–Learning to read is a great struggle for Adam, but with expert help, hard work, and belief in himself, he wins “The Alphabet War.

* See the Ocean, Estelle Condra–Driving through mountain fog to the beach, two young brothers compete to see who will first see the ocean, but it is their blind sister Nellie who senses it first.

* Knots on a Counting Rope by Bill Martin Jr./John Archambault–A grandfather and his blind grandson reminisce about the young boy’s birth, his first horse, and an exciting horse race.

* Thank You, Mr. Falker, Patricia Polacco–Trisha could paint and draw beautifully, but when she looked at words on a page, all she could see was jumble. It took a very special teacher to recognize little Trisha’s dyslexia.

* Mama Zooms, Jane Cowen-Fletcher–A boy’s wonderful mama takes him zooming everywhere with her, because her wheelchair is a zooming machine.

* My Pal, Victor / Mi amigo V?or by Diane Gonzales Bertrand –Two boys enjoy the summer doing all of the things that boys do despite one boy’sdisability.

* Two Tracks in the Snow, Louella Bryant–Ari, a boy who uses a wheelchair, uses his monoski to teach Will how to snowboard.

* Silent Lotus, Jeanne M. Lee–Although she cannot speak or hear, Lotus trains as a Khmer court dancer and becomes eloquent in dancing out the legends of the gods.

* Crow Boy, Taro Yashima–A lonely boy in a village school in Japan learned all the calls of the crows as he left his home at dawn and arrived home at sunset on school day.

* Ian’s Walk, Laurie Lear–A young girl realizes how much she cares for her autistic brother Ian when he gets lost at the park.

* Featherless (Desplumado), Juan Felipe Herrera–Although Tomasito’s spina bifida keeps him in a wheelchair, where he often feels as confined as his flightless and featherless pet bird, he discovers that he can feel free when he is on the soccer field.

* Keeping Up with Roo, Dan Andresen/Sharlee Glenn –Gracie has always had a special bond with her Aunt Roo, who is mentally disabled, but that relationship starts to change when Gracie beginsschool.

* Dad, Jackie, and Me, Myron Uhlberg-A young boy shares the excitement of Jackie Robinson’s rookie season with his deaf father.

Click HERE for the link to the original article

It's a sad day

I have just learned of a sweet little girl Catherine born November 15, 2009 to Josh and Elizabeth. Catherine's mother is part of my on-line Spina Bifida support group. Baby Catherine was born with Spina Bifida and mild Hydrocephalus just like our Annabelle. Sadly, Catherine did not survive her shunt surgery on Tuesday, November 24th. No words can express how this family must be feeling right now.

My heart aches for them and I don't know any way to help them except to ask for prayers for them from the people who have been so diligently praying for Annabelle. Please pray for this sweet family as they try and deal with the loss of their sweet innocent baby. Please pray that they will be able to explain this tragic loss to their other three very young children. Please pray that they will some day be at peace.

This Thanksgiving I ask that you please pray for all babies with Spina Bifida that God will protect them always.

Heading to the ER

Click here to read the details on Annabelle's blog. Please keep us in your prayers (again!)

Annabelle's blog

Just an fyi for anyone who is interested in Annabelle's blog. I have added a few basic posts with pictures and you can click here if you would like to see them.

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.

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!

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

Shunt Revision Surgery

Annabelle will be having a shunt revision surgery tomorrow morning (Wednesday 9/30) at Long Beach Memorial Hospital. Her CT Scan from Monday showed that her ventricles have continued to increase in size which indicates that the shunt is not fully draining as it's supposed to. If all goes as planned she should be home by Friday.

Thank you for continuing to keep Annabelle and our family in your prayers.

Weekend of Worries

Although it was a nice weekend it was a weekend overshadowed by worries. Worries for our little Annabelle. We first noticed that she was a bit more sleepy than usual. It had been easy to say "she's a newborn, barely even 8 lbs, of course she's sleepy" but this seemed much more than that. Then on Saturday night she became even more sleepy and less interested in eating. This went on for approximately 15+ hours of wanting to sleep and not eat. We knew something was wrong.

We measured the circumference of her head and unfortunately it had grown 2 cm since the last shunt scare (September 3rd). Our research indicated that typical head growth is about 1 cm a month. Annabelle is actually averaging about 3 cm a month :-(

Yesterday, I spent the day talking with the on-call pediatrician and neurosurgeon. We all agreed that she needed a Cat Scan, but the only way to get one on a Sunday is to go to the ER. After a lot of consideration we opted to take care of her at home until I could get her an appointment. We just didn't feel that sitting in the ER for 10+ hours away from the boys and her bed, etc. was the right decision. She had a decent night of eating and sleeping.

I was able to get her into for the Cat Scan at 11:00 am this morning. She was such a good girl - didn't cry at all. I had to take the boys with me which was a bit stressful. Thankfully my mom met us there and they took these fun coloring kits they had gotten from a friend when the baby was in the hospital - thanks McClain Family. I felt so much lighter once the scan was done. Even though we didn't get the results right then, I knew the doctor would be looking at them and we would move forward from there. The Neurosurgeon's office called at about 4 pm and said they wanted us to come in tomorrow. The person on the phone was unable to give me any feedback on the results of the scan, which was super disappointing, but understandable. We are scheduled to see Dr. Javahery tomorrow at 1:45.

I am feeling like no news is NOT good news in this situation. I'm sad and worried thinking about my baby girl possibly having to go back into the hospital. She has made such great progress here at home these past 6 weeks. She is such an amazing little girl. I worry so much about this shunt and any long term effects of a malfunction, the fluid build up and of course the surgery itself. Branden doesn't want me to to worry and get ahead of myself. He's being super calm - probably to balance me out. I'm pretty stressed out and tired tonight. I need to stay strong for the kids - all of them. The boys really feed off of my stress and not in a good way. My milk supply always goes down when I'm stressed - it's just not good for anyone.

I KNOW that we are loved. I KNOW that our friends and family are praying for Annabelle. I KNOW that God will be with her and our family through this scary time. We will be okay - my head knows this, my heart is just feeling a bit heavy.

Tomorrow is Annabelle's 2 month birthday.

HAPPY BIRTHDAY BABY GIRL - WE LOVE YOU!

Insurance Update

It's been a while since I wrote about our insurance situation and wanted to provide a quick update. I have been working very diligently each week with the insurance company to see what can be done about the outrageous bills we are getting and anticipate in the future. I have to say Great West, well actually our Customer Service Rep. Bethany has been great. It's funny (not funny ha ha, just funny) how once a significant amount of LARGE bills start to rack up the insurance company assigns you a dedicated customer service rep. It's actually been very helpful and we are very grateful for her help. She has been actively working with Annabelle's non-contracted doctors (two in particular) attempting to get contracts agreed to, back dated to the date of Annabelle's birth and signed. As of today an agreement has not been reached but I am feeling encouraged and was advised to check back next Thursday. Although they will not be "regular" in-network contracts they should be way better than what is being covered for these doctors right now. So I am choosing NOT to get completely thrown for a loop regarding the crazy bills were are getting.

So, nothing really new but I am feeling encouraged. Also, we were able to confirm that her Orthopedist and her Urologist (both super critical doctors) that she saw two weeks ago are considered contracted doctors. This was GREAT news!! I will update again with the final news.

What It Means to Be Loved

We recently learned of this Artist (Mark Schultz) and in particular the song: What it means to be loved and wanted to share it. The words are so beautiful, so inspiring and really touched our hearts.

Here's the link to his website:

http://www.markschultzstore.com/comealive/
Once on his site click listen, then click on song #4 - What it means to be loved
*you can click on the title of this post and it will take you directly to his website.

After listening to this song it sparked a conversation between Branden and I that I wanted to somehow document. We want to ensure that Annabelle knows that we love her unconditionally and have loved "the baby in my belly" since the moment we found out I was pregnant. Yes, it was a very sad day in March of this year when we were told that our daughter would be born with Spina Bifida, a very serious birth defect, however, it never entered our mind that she wouldn't be born. She is our gift from God and we would never consider terminating the pregnancy. I'll admit the pregnancy was very difficult - the worrying, the fear and all of the unknowns. However, that is gone now and has been replaced with happiness and joy for this amazing little girl who completes our family.

We continue to be saddened when we think about how many times we were asked if we wanted to terminate the pregnancy. We look at our beautiful, sweet, bright eyed daughter who is so full of life and can't even imagine that someone would consider not bringing her into the world. It was primarily the doctors who asked the questions, not friends and of course not family. Anyone who really knows us, knows that as a Catholic and as a mother, an abortion would never be a consideration - regardless of how bleak a picture the doctors might have painted.

We didn't and still don't fully understand why we were chosen to be Annabelle's parents, but we are so thankful we were. We are so thankful for the opportunity to show her what it means to be loved.

Update on Belle's condition

The Scan Results seem good. The left ventricle is full decompressed and the right is partially (not completely sure what all that means). So his intitial thought is that the shunt IS working. However, after speaking with Belle's pediatrician the decision is that we need to take her to the ER (now) and have a blood and urinalysis completed. This will rule out a urinary tract infection which is VERY common in children who have Spina Bifida. If that comes back normal they may "tap the shunt" which can tell thim if there is an infection.

Okay - off we go. The boys are going to be here with their Grammy. As always, please keep us in your prayers.

Cat Scan update

It's scheduled for today at 1:00 pm at Miller's Children's Hospital. Keep us in your prayers. Will update when we know anything new.

Possible shunt malfunction

I can't even believe that this is happening. My heart is breaking at the thought of our precious little girl going back to the hospital for a shunt revision. We saw the neurosurgeon on Tuesday and he confirmed what Branden and I felt on Monday night on the top of her head. I called it fluffy, Dr. Javahery called it bulging fontanels. Any way you call it, it is not good. The bulging / fluffiness is a possible indication that the CSF
(cerebral spinal fluid) is backing up and therefore the shunt is malfunctioning in some way. Annabelle was extremely fussy during the entire doctor's visit, which has not been her way until the last 72 hours. He was surprised by the amount of crying, grunting and straining she was doing - I was too. We noticed that she was a bit more sleepy and not eating well this past weekend, but in light of the fact that our house has been upwards of 100 degrees (not really sure of the actual temp. but it was horribly hot!) we just figured she was hot and tired like the rest of us. So, now the decision is that she will have a Cat Scan either tomorrow or Friday to see what's going on with her shunt. Obviously, this is extremely scary and stressful for our family and we are once again asking for your prayers. Please pray for Annabelle, our boys who are seeing a very sad mommy and for Branden who is doing his very best to juggle work and taking care of his family with very little sleep.

Annabelle's 1st Dr.'s Appointmnet

Today was Belle's first "out of the hospital" doctor's appointment. She met with Dr. McCormick, her pediatrician. It was really nice to just go to a typical check up and hear positive information. She thought that Belle looked really good and was pleased at how her back wound was healing. She was also SUPER pleased that Belle gained 1 pound and grew 2 inches!!

Annabelle - 3 weeks, 1 day old
5 lbs 9 oz
18 inches long

After Belle's doctor appointment we met with the lactation consultant at LBMMC to get a bit more help with breast feeding. It was a productive meeting and she was pleased with how well Belle appeared to be nursing - yeah!

Myelomeningocele

For those that are interested, here is a little background on the type of Spina Bifida that Annabelle has.

Myelomeningocele is the most severe form of spina bifida. It occurs when the meninges push through the hole in the back, and the spinal cord also pushes though. Most babies who are born with this type of spina bifida also have hydrocephalus, an accumulation of fluid in and around the brain.

Because of the abnormal development of and damage to the spinal cord, a child with myelomeningocele typically has some paralysis. The degree of paralysis largely depends on where the opening occurs in the spine. The higher the opening is on the back, the more severe the paralysis tends to be.

Below are some pictures of Annabelle's back pre and post surgery. I apologize if this is hard for some to see. Our reason for posting them are two fold:

1. When we got the Spina Bifida diagnosis while pregnant we found it very helpful to seek out pictures, stories, etc. about SB. Seeing actual pictures (not drawings) helped us to understand a bit better what we were in for. It helped to take the shock away a bit when she was born because we had seen other children's lesions (both big and small). We hope these pictures as well as our blog documentation of her progress will be able to help other families who find themselves in a similar situation. It's not pretty to look at, but it is a part of Annabelle and us.

2. To provide friends and family with a better understanding of what her back looks like. We unfortunately will not be allowing people to hold her until her back is healed as it is very delicate. We hope that the pictures will be able to express that better than we could verbally.

This is how Belle (as I call her) or Gracie (as Branden calls her) or Flower (as the boys call her) back looked on the day she was born.

Day # 2 (1 day after her surgery)

Day # 9

Day # 14 (Discharge day)

The middle triangular area is the area that is still open and needs to heal / close. Because her lesion was more than 50% of her back it was difficult for the neurosurgeon to find enough skin to actually close the back. He is very hopeful that with good wound care, minimal disruption to the area and no infection the back will eventually close. If he doesn't see significant progress he will eventually call in a wound care team and possibly a plastic surgeon.

Please feel free to ask us any questions about what you have read or saw in these pictures. We want Annabelle to be proud of who she is and we plan to never be shy or secretive about her condition. It is our goal to embrace the path that God has chosen for her and our family.
summersfamily09@gmail.com

Our prayers have been answered

On Wednesday afternoon at 3:15 the Diagnostic Hearing team finally came to administer Annabelle's higher level hearing exam. This exam was ordered on Sunday night but due to some hospital protocol (test is typically done outpatient 2-3 weeks after discharge) and a disagreement between two Dr.'s it hadn't been done. Thankfully we have many many friends at the hospital over the last two weeks who were willing and able to make the test happen for us. We have just been so overwhelmed with fear for our sweet daughter that she might not be able to hear.

Well, it's not official, as the test results need to be reviewed an evaluated by the specialist, however, the technician's who administered the test told us that both ears registered normal!
Our daughter can hear!

THANK YOU EVERYONE WHO HAS PRAYED FOR US AND OUR DAUGHTER.
GOD IS GOOD!

PICTURES FROM SUNDAY (August 9th)

Belle was such a good girl during her hearing exam and

she looked super cute with her little "ear phones" on.

She was talking up a storm - it was SO cute!


Listening to a little Billy Holiday while singing to his baby girl

So close and snuggly. We can't wait to snuggle with her like this at home

Belle was wiped out after all of those hearing tests

update

This is going to be short because I just don't have the energy or the words to really express the deep sadness that Branden and I are feeling right now. We are so blessed to have so many friends and family that have been waiting for an update today. I'm sorry that I just wasn't able to respond.

Yesterday and today (Sunday and Monday) have been extremely exhausting days. It seems that we just keep running into more bumps in the road. Our poor little daughter is poked and prodded at daily (around the clock) and my heart just aches for her. She is so sweet and beautiful and we are so overwhelmed by the challenges facing her. We would give ANYTHING to make her future easier for her. For those of you that don't know already, Annabelle is paralyzed. She has essentially no movement in her legs from the hips down. This was quite unexpected. We anticipated some paralysis but were lead to believe that it would be lower in the ankles and feet. We certainly know that not walking isn't the worst thing in the world, but it's hard to not be sad about this.

Our newest challenge is her hearing. Annabelle has failed her hearing screen. They attempted it twice on Sunday and it was inconclusive. Today's test was considered a fail. We just can't even get our heads around the possibilty that our little girl won't be able to hear. We are mad, sad, and every other emotion you can think of right now. I know that life isn't fair but this just seems so wrong that she won't be able to walk and now might not be able to hear. I am so sad and I just don't know how much more news like this I can take.

We just hit 2 straight weeks that our boys have had to be with someone else besides their father and I. This has been very hard on them. They have been so good and have been having fun with their Grammy, Aunts and Uncle but they are clearly ready for their sister to come and to bring their parents with her. As a stay at home mom who is always with her children I too am missing them as much as I believe they are missing me.

We truly believe in the healing power of prayer - even now when I am feeling so beat down and sad I know that God is watching over Annabelle and keeping her safe. We are asking that anyone who reads this to PLEASE pray for Annabelle's hearing. Please pray that he will help her hearing work as it should so that she may hear all the beautiful and not so beautiful sounds of this world we live in. We ask that you please slip in a prayer for Branden and I to have strength as we face each day trying to be an advocate for our daughter at the hospital and trying to ensure that our boys feel loved and secure each day.