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Hanna's 3rd Birthday Party

Hanna had a great 3rd Birthday!!! Here she is with her favorite present, a horse named Lucky. Thanks Kiki & Bear Paw! After her party at the bounce house, she got to open her presents at home and the sun glasses were the biggest hit:). She had a great time with all her friends that could make it to her party. Thanks for coming guys and gals!

Gaga came for the fun all the way from cold Colorado.

Below are some of our attempts at getting a nice family Christmas picture. We have yet to have any professional pictures taken of our family. I just don't know who would have the skills to work with this lil Diva.

We might be sending out a New Years or Valentines card instead this year:). Notice Hayden's protective reflexes developing.

Happy Thanksgiving

We had a great day today. Here is a sneak peak of our Thankful day!

This is the dessert buffet!
Hayden was his handsome, happy self. He ate his first mashed potatoes.
Hanna loved the chocolate fountain best!

This is Hayden's borrowed stander until his fancy metal custom one is made. Check out those cute legs!

He loves his stander as long as Hanna is a nice sister.

Great Video about Spina Bifida

http://sophiesvoicefoundation.org/home.html

Big Week

This week has been a big one for us. On Monday, we almost lost our wonderful 8 year old dalmation, Domino, to a ruptured bladder. After rushing him to the vet hospital, he had surgery to repair his bladder and has been recovering for the past few days. We are excited to take him home tomorrow.


Hanna had her first "hair" cut -- just shy of 3 years old. It was a small curly lock that had her looking mulletish. This was hard for her momma to do but she didn't even notice.

Hayden also got approved for Medicaid!!! This provides many things for us all including his first in-home RN to help with respite care. This is a great thing.


Today was also a great day. Hayden got fitted for a stander from his PT. The stander is to help him start bearing weight on his feet and legs. He absolutely loved it!!! His PT said in all her years she had never seen a baby take to it as well. He looked like such a big boy upright, not like the baby I cradle in my arms.


I was overly emotional to see him love it so much. A custom stander runs about $3,000 and will take 3 months to order. Fortunately, medicaid along with our private insurance provider should be picking up the tab. He also will be fitted for ancle braces (AFO's) and got a chair ordered to help him sit upright and a chair for his bathtub to help him take baths.


Also, as to the update for Hayden's eyes, we will continue to patch them for another 2 months.

Halloween Pics

We sure had a lot of fun with Kristin/Kiki and Barry/Bear Paw's visit from Albuquerque. Hanna got to wear her costume 4 times so she got lots of trick or treating in. Hanna decided to be a butterfly princess and Hayden was a pirate with his patch. This is Hanna saying cheeseburger!

Hanna has recently been showing us her 2 year old trick/tantrum if she didn't get her daily treat(s). We love our visitors and we all had a great time!

Pumpkin Patch Fun

Hayden is now 8 months old. It was a year ago at this time that we learned the news after our 20 week ultrasound that Hayden had Spina Bifida. We had never even heard of it. We were devistated. Honestly our emotions were so strong, it was a blur as we were informed of our options just after our appointment. It was a great trial of our faith and of our extended families. Our options discussed with us were to continue with the pregnancy, see if we qualified for a national in utero surgical study, or a late term abortion. It was overwhelming. This can be re-read on our October 08 and November posts. We cried nearly every day for a long time.

For any other parents out there faced with this same information, I would like you to know that where we had overwhelming saddness we now have overwhelming joy. Hayden is a happy, sweet baby and most would never know that he had any disability by looking at him. He is a blessing and a gift that we can not deny. When I was pregnant, I feared that our lives would never be normal again. Our lives have been changed and greatly enriched. This October, we celebrate and enjoy!

Over the past month I have been collecting quite the collection of Fall photos. Attached are a few to date. This was the best picture we could get of all the kids at one time. Not an easy shoot with 4 kids under 2 yrs.

We had the unique experience of going to visit the pumpkin patch 2 times this year. This is Hanna's patient picture smile and Hayden's cute goofy scrunched up chubby smile.We had so much fun we had to go to the pumpkin patch again with our friends. The first time we went all of our photos got deleted from our camera. So the second time we went, our camera battery died. We did get some great pics though thanks to our friends.Thanks Nana for knitting Hanna this awesome poncho!

Hanna got to ride Stormy the horse 2 times!Hanna's friends Blake and Bairn.

Spina Bifida Awareness Month

A shout out and CONGRATULATIONS to the Burr family (see their blog link on the bottom right) and the birth of their little girl last 9/23/09. What a courageous family to undergo the in utero fetal surgery!

Last weekend we got to participate in a national walk for people suffering from Arnnold Chiari brain Malformation, often referred to as ACM. We met a lady from our church that has ACM I. She worked hard to organize and get information out about Chiari and its terrible effects. Our precious Hayden was diagnosed with ACM II which means that his part of the brain that controls his nervous system is compressed and under pressure. ACM II is often associated with Spina Bifida. To learn more about ACM please visit:
http://www.conquerchiari.org/index.htm

Along with this, October is Spina Bifida Awareness Month!
http://www.cdc.gov/features/spinabifida/
It was a year ago that we learned the devastating news that our precious baby boy was diagnosed with Spina Bifida. The race was on to learn as much as possible to help our unborn son. Our resources for information seemed limited. Doctors could diagnose, but prognosis of the day-to-day life of the children and parents was hard to find. For those families that we were able to talk to, they brought us great hope. For that reason, we continue our blog publicly so that we may give others hope and share our happiness and triumphs over challenges.

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.

Fall is finally here!

It has been a while since our last post. It feels wonderful to have no new medical news for you other than our most recent overnight stay at a nursing home (this is to help expedite Medicaid benefits for Hayden). Hayden continues to wear his eye patches practicing to be a pirate for Halloween and Hanna continues to love learning at preschool.

Earlier this month we went to Dallas for our cousin, Anthony's, engagement party. We had a great time and the kids loved getting to see Gaga too. Hayden is getting stronger at holding his head. He rolled over for his first time on this trip and is working on sitting up and pushing up. On our road trip back home we toured the new Dallas Cowboys football stadium before it opened for the official first game. Not being a football fan (this is Adrienne typing), it was still fun.

We also had a great time with the Hanna family visiting from Philly. Work conference, BBQ, ESPN, outlet shopping, swimming and birthday party were lots of our festivities. John and Scott went to UT College Game Day with ESPN and took the kiddos while Paige and I got to go shopping with the babies. It was wonderful for all of us. Hanna and cousin Drake were so cute and nice to each other while Pierce and Hayden (both 6 months old) were sweet as ever and acted like twins. I have to break my own rules and put thier pictures on our blog. The cousins are just too cute and I know that these pictures are already out on the Hanna's blog or facebook:).

"Even without a perfect body, one can have a perfect soul."

I usually delete all forwarded e-mails but this one I thought might be good to post as it relates to kids born with Spina Bifida. It also applies to anyone told they "can't" do something. Below is posted the content of this e-mail:

This dog was born on Christmas Eve in the year 2002. He was born with 2 legs - He of course could not walk when he was born. Even his mother did not want him. His first owner also did not think that he could survive and he was thinking of 'putting him to sleep'.

But then, his present owner, Jude Stringfellow, met him and wanted to take care of him. She became determined to teach and train this little dog to walk by himself. She named him 'Faith'. In the beginning, she put Faith on a surfboard to let him feel the movement. Later she used peanut butter on a spoon as a lure and reward for him for standing up and jumping around. Even the other dog at home encouraged him to walk.

Amazingly, only after 6 months, like a miracle, Faith learned to balance on his hind legs and to jump to move forward. After further training in the snow, he could now walk like a human being. Faith loves to walk around now. No matter where he goes, he attracts people to him.

He is fast becoming famous on the international scene and has appeared on various newspapers and TV shows. There is now a book entitled 'With a Little Faith' being published about him. He was even considered to appear in one of Harry Potter movies. His present owner Jude Stringfellew has given up her teaching post and plans to take him around the world to preach that even without a perfect body, one can have a perfect soul'. In life there are always undesirable things, so in order to feel better you just need to look at life from another direction.I hope this message will bring fresh new ways of thinking to everyone and that everyone will appreciate and be thankful for each beautiful day. Faith is the continual demonstration of the strength and wonder of life.

Eye patch

Hayden has got two months of practice for his Halloween pirate costume. This was his first outing with it on and first swing time in the park.

You have to check out the video of him eating cereal on the right bar of youtube videos. I couldn't get it to upload on this posting.

Firsts

Hayden's first food, rice cereal...not really a favorite. See how he is eyeing the Sunday morning breakfast of Scott's green chile scrambled eggs & french toast.

He got his first pair of Nike shoes thanks again to the Pool fam!

Hayden's trip to the Ophthalmologist was a success. She said his optic nerves were great and that he had good vision. He does have weakened muscles on the outer edge of his eyes due to the hydrocephalus and that we will need to alternate patching his eyes for 2 months to help strengthen them. Whew..this was great news!

Hanna's first day of pre-school. She loved it and didn't look back. Even cried when she had to leave. Makes you wonder what her mother does or doesn't do at home doesn't it.