Fitted for Her STARband Helmet!

First she had to be stripped down to the diaper and her head was covered with part of a surgical hose to keep her hair somewhat clean and allow the casting to be easily removed. I apologize if some of you find this inappropriate, but I thought she looked like a little condom. I laughed and she took it well.

Dr. Len Orzechowki (aka Lenny) thought she had the most hair he has ever seen on a baby so young. Putting the sock on her head was a chore. This is a photo of him molding the plaster strip on the back of her head. Messy! But again, she did great.

Still molding and shaping and letting it dry. It didn't take long for it to harden up like a helmet!

Relaxing afterwards....it wore her out a bit. It was a chore to clean her up enough to put clothes back on. Plaster droppings everywhere. Her hair was a mess and she had ink stains on her forehead and temples.

You can see the blue ink on her face. They use a pencil, wet it down, and it turns to ink. Pretty cool. Anyway, they mark her ears and center of her head so the helmet is just right for her.

Alayna is doing better in the bumbo. She still can only last for a few minutes at a time, but she is starting to try and grab at the toy on her tray. She's getting it and it's exciting to see these changes. They are so long waited for.

I'm trying to get Alayna to bear more weight on her legs. She likes to stand for only a few seconds and she thinks she is a big girl. She can get heavy and she is like a wet noodle...hard to hold onto.

This is the crew at Lori's, her babysitter. Pictured is Lori holding Alayna, Douglas of course smiling and not looking, Emily is the blonde in the center and is 2 1/2, Ella is in the greenish shirt and is 3, and Mia is 6 and she just visits when school isn't in session. Those little girls love Alayna and flock to the door when she arrives in the morning. It will be great motivation for her when she gets a bit older.

This is Alayna with adorable little Gavin. He is 2 1/2. Obviously, they both love their pacifiers and you can see the resemblance in the eyes. Again, we met him and his family at the 1p36 conference.

This is Alayna with precious little Whitney who is 3 1/2. Again, you can see some resemblance.

This is little Abby who is 18 months old. She weighs a tiny 11 pounds. She is dainty, but has defied all odds. Her mom told their remarkable story and Abby is truly a miracle. She has an older sister and 3 older brothers.

This is Danielle, Seth, Melissa and Rebecca (1p36). Rebecca is 22 months old with lots of curly dark hair and eyes. Danielle is from Brazil and I just loved hearing her say "Becca." They are so nice and live in Florida. We hope to go see them again someday.

This is the Hanson family from Utah. We ate dinner one evening with Nate, Melanie, Whitney (1p36) and little Liam. I got to hold Liam so his mom could eat her meal and he fell asleep. He is just as adorable as Whitney. When Nate tickles Liam you should hear Whitney laugh! Another awesome 1p family.

I want to share some of the things I wrote down from the 1p36 conference, but first I'd like to share Thursday's experience of getting casted for a helmet. We went to see Dr. Orzechowski, who is referred to as Lenny and I'm glad because I won't even try to pronounce that name. Anyway, he is with American Prosthetics & Orthotics and is located in the same building as my dentist. It is really convenient being right off 7th street in Moline.

Alayna has a pretty flat head in the back due to not being able to sit up yet by herself. She is going to get what is called a STARband Cranial Remolding Orthoses. It is basically a helmet that is fitted specially for her and is a simple solution to fix her abnormal head shape. She had to have her head casted with plaster and the mold is sent to Florida so the actual helmet can be made. It takes about 10 working days to be shipped, made, and shipped again. I pray that it makes it there in one piece so that we don't have to do the casting again!

It will put pressure on certain places on her head and leave gaps where her head needs to round out. It forces the head to become symmetrical.Alayna will eventually wear her helmet for 23 hours a day, but needs several days to adjust to wearing it. We have a schedule to follow that gradually increases the wearing time each day. By day 5, it'll pretty much be full-time. Alayna will probably not like us for a small period of her life, but she won't remember it. She'll thank us someday for not having a flat head! Correction usually occurs within 3-6 months, but it just depends on how rapidly her head grows and responds. Some kids take a shorter amount of time and some take longer.

I never thought about it, but there is a lot of care that comes along with the helmet. It can make her sweat, so it will need to be cleaned with rubbing alcohol and thoroughly dried every now and then. I imagine that it could start to smell just like any other cast if not cleaned properly. Yuck, we'll make sure she always smells good! And at least it will be primarily during the cold winter months. I have papers I'll copy for all of our family members and caregiver to read over. It explains what to do and what not to do.

Before I start bulleting some of the main points of the conference, I just wanted to share that when I pick Alayna up from Lori's house after work, she is all smiles at me and kicks her legs so fast. It feels so good to know that she recognizes me and reacts that way. Lori says that I do get the best smiles out of her. I love her!

Here are some things I learned or took notes on at the Florida Conference:

*Monosomy 1p36 occurs in about 1 in 5000 births

* 1p36 Deletion is the truncation of the short arm of chromosome 1

*5% of children with mental retardation have a terminal deletion

* Most common abnormality of deletions is the rearrangement of 1p36

*Subtelomeric FISH test is used to diagnose 1p36 and looks at each chromosome in detail

*There are 4 types of deletions: terminal deletions, interstitial deletions, unbalanced translocations, or complex rearrangements

*Terminal deletions are the most common type and they range from 2 million base pairs of genes - 10 million base pairs

*average deletion size is between 4-5 million base pairs of genes

*FISH testing can determine a child's deletion type, size, and whether it is maternal (egg) or paternal (sperm)

*maternal deletions tend to be the smaller size deletions and paternal deletions tend to be the larger deletions

*there seems to be no connection between size of a deletion and the symptoms the child experiences - there are documented cases of large deletions with minor problems and small deletions with many problems

*1p36 Project began in 1994 in Houston, Texas by Dr. Shaffer. Today, 144 families are enrolled (we did at the conference). In about 127 subjects, 67.8% had terminal deletions, 9.4% had interstitial deletions, and 6.3% had a translocation or complex rearrangement.

*Our 1p36 family has a goal of starting a foundation to raise money and create more awareness.

*It is believed that when a chromosome breaks it tries to stabilize itself by adding a cap to the end of the chromosome.

*A genome (complete set of chromosomes) contains about 30,000 genes.

*We can function okay with only 1 copy of about 90% of these genes.

*However, we need 2 copies of about 10% of our genes to function okay. These are the "sensitive" genes.

*They think that the tip of the chromosome 1 contains many of these "dosage sensitive" genes...bummer. This is what causes our kids delays and health issues.

*The good thing is that all of our genes communicate together from one chromosome to another. We hope that these other genes are "the genetically good ones" from both the mom and dad so they can pick up some of the "slack" so to speak.

*Speech is always delayed, walking is delayed, hearing is affected and there are many other health issues that are common is our 1p36 kids. Hypotonia, low muscle tone, is very common amongst our kids. But we have a lot of hope that Alayna will talk someday. And we know she'll walk.

*Signing counts as language as well as using pictures.

*Mylenation is a process of the brain that creates a fatty layer that helps connect and conduct. It just seems like these kids brains are just "not there" yet. It's important to always stimulate their brain because it is constantly changing.

*Seizures in these kids usually always stop. This is good news for some of our families struggling with this.

*Siblings of these kids are special. Siblings of special needs kids usually have a kindness in their hearts that siblings of other children would not experience. It is documented that many go on to professions that help other people.

*There is a broad spectrum of severity in 1p36 kids just like all other syndromes. Dr. Shaffer is the pioneer to hopefully make some connections and discoveries about 1p36.

*A Florida pediatrician is in the process of trying to chart our children's growth and develop a 1p36 Growth Chart for our kids. We can't expect them to be on the normal growth charts all of the time. They are usually very small babies at birth and tend not to gain weight very quickly. Pushing calories isn't the right thing to do with these kids just to get them on the normal charts. It has been documented that some of our 1p kids see a weight gain between ages 4-7 years of age. So pushing extra calories can catch up with them.

*It's been shown that hearing with 1p36 kids improves over time. I hope Alayna's does! I truly believe that it's a "neuro" brain thing.

There is so much more that I'm sure I'm missing. I am going to purchase a DVD of the actual presentations and a DVD of all the pictures taken. We hope to have it by the holidays so we can share it with our family and friends. Dana and I are so thankful to have found the Yahoo site and meet our new 1p family. It is so nice feeling a connection with other couples that you know have gone through the same kind of things you have. It was a very emotional weekend and most of us had a hard time saying goodbye. I kept telling everyone that it really wasn't a goodbye, just a "see you later." We hope to make this an annual event and the group is looking into switching locations to accommodate all of the families across the U.S. Nate, Whitney's dad, has a great website if any of you would like to learn more about 1p36. He has done a superb job on documenting Whitney's experiences and sharing them with all of us. Check it out at www.raisingadisabledchild.blogspot.com Mark it as a favorite too!

Again, our adventure is a never ending learning process. Some people are sent to Earth to be learners and some are sent to be teachers. Alayna is a teacher. She has taught me more than she will ever know. I'll be grateful for this the rest of my life. God Bless.