11/23/11 It's been a while

I know it has been a few days..but there is only so much cute stuff that I can write about before you all stop reading my blog. We all know how cute Deuce is...and that he is chunky...and that he is the smartest baby ever!! LOL

Anyways, I was talking to my sister and one of my besties yesterday about a dream I had and wanted to share.
 I was at the hospital with my husband, mother and stepfather waiting for Deuce to come out of surgery. I see the doctor walk up to me and it seems like it is all in slow motion. He is shaking his head and he tells me Deuce did not make it. I can see myself screaming and trying to hit the doctor and my husband is holding me back. But what was weird was I felt the loss in my heart just then. I woke up crying and for like 5 or 10 seconds I felt like my insides were ripped out of me and my soul was no longer mine. I felt so empty and meaningless. It felt like my heart exploded and that I had no reason to live at that point.
 Then I looked over and I saw Deuce laying next to me and at that instant I felt full. I can't even explain how wonderful it felt to look over at him. I couldn't imagine losing him. I know it's normal for a mother to think or dream of bad things happening to their children, because we try so hard to protect them. I'm so in love with my children, I can't even explain. I wished I was able to take his place in surgery, and take all the pain he will endure away. He is perfect in my eyes and I love him exactly the way he is. The closer his surgery date gets the more nervous I get. At this point I think I have completely shut down emotionally and need to just get through these next few months.
 On a brighter note. Deuce took his first few steps. I am so proud of him. I think a baby learns from seeing others and my Bff's son, Grayson, is just starting to walk. I think Deuce sees him and wants to get around like him. Those two boys are funny. Deuce is not a huggy kissy baby and Grayson is. Grayson wants to hug and maul Deuce with love and Deuce wants no part of it. It's very funny to watch them together. I wished Deuce was more lovey dovey but maybe it will happen later down the line.

I am really wanting to start taking donations to make care packages for people in this area who is going through the same thing I am going through. I can't find any support groups in this area and I know Deuce isn't the only one that this has happened to. The color that represents Craniosynostosis is purple, so someway I would incorporate that in the gift baskets. Something for the babies that are in the hospital. Blankets, toiletries, mouthwash, toothpaste,snacks, toys, ect. ---- I am going to do this!

Well, Happy Thanksgiving everyone.
This is a time to be thankful and I just want to say I am thankful for my children, my family and my friends.

xoxoxoxox

11/15/11 Insurance Update

IT'S APPROVED AS A IN -NETWORK DOCTOR AND HOSPITAL!!!!!!!! GOD IS GOOD!

I'm so thankful...I am here to tell you folks...praying works!

11/14/11 Weekend Update

It was a good weekend...hope everyone had a blessed weekend like I did.

I recieved a email from a lady who started Ava's Elephants which is a wonderful organization. This lady sends elephants with the childrens names on them to children with Craniosynostosis so they have something to bring to the hospital. The email is below. For anyone wanting to donate, here is the email below. If you do order one for Deuce then make sure you post that you did so he doesn't end up with 15 :)
Thank you all.

Stephanie,
Thank you so much for contacting me. I will most definitely be keeping your son in my prayers as he faces this surgery. I know first hand how emotionally challenging this journey can be. Please know that you too will be in my prayers. I can honestly say that you will find strengths you never thought you had. You will also be nothing short of amazed at your son's strength, drive to be well, and bravery through the entire process.

I am more than happy to personalize an elephant for your son as a way to show my support to cranio kids. Meg’s Gifts, in High Point NC, has teamed with me to provide the elephants. We are asking that a 15.00 donation be made just to help cover the cost of the stuffed animal. Any donations are highly appreciated so that we may see this project continue.

Donations can be made payable through Paypal (ashley@avaselephants.com) or to Ava's Elephants (PO Box 6437, High Point, NC 27262)

Please let me know your son's name, as each elephant is personally monogrammed, and a mailing address.

Much Love & Support,

Ashley
Ava's Elephants
"Bringing Smiles To Little Faces"

 

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Deuce's Dedication was at Keypoint Church this past Sunday night. He was a little ham, getting all the attention. It is funny how people always talk about how big he is. I think he is perfect..a little heavy, but perfect. I was so blessed to have my family there. Our friends Amber, Scott and Grayson were there to be apart of his dedication but missed our friends Lisa and Jerry and our other friends Ethan and Shelley. We love them all the same but it would of been even more special with all of them there. If I could, I would have invited my whole FB friends list! LOL

I posted pictures on my Facebook page for anyone wanting to see Deuce acting like a ham!

More importantly, I am extremely happy that we made a commitment before the Lord to submit our child to God's will and to raise Deuce according to God's Word and God's ways..

 

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I spoke with the hospital and no word yet on the insurance company, but they said they ARE working on getting Deuces surgery approved. Keep your fingers crossed people!!!

 

 

 

On another note...I am happy to have my son Jackson home from a weekend football trip. I heard he did really well. It was nice seeing him walk through the door last night.

My daughter, S'Dney, went buck wild at Victoria Secrets on Saturday...what happened to my little tomboy??

 

BTW - Purple is my new favorite color. It respresents children with Craniosynostosis.

 

 

Toodles,

Stephanie

11/11/11 Long but wonderful day

I know this blog is about Deuce, but this involves him so I am going to write this anyways....


A lot of things happened today... I woke up this morning tired. I am trying to get Deuce off the bottle at night and he is NOT being nice about it at all!! NOT ONE BIT!
 He went to sleep fine but it seemed like he wanted a bottle every few hours. Finally, once he got tired of me ignoring him, he got CRUNK! He started flopping his body on top of us like a beached whale and crying, then he tried to headbutt me!
 I need him to be off the bottle before we get to the hospital since he isn't able to have anything 12 hours prior to surgery. Can't we have a nice conversation about it? Must it result in violence?? Well, needless to say...Daddy and I did NOT sleep well.
 I woke up and kissed Pookie, my 12 going on 20 year old daughter, off to school and realized that my other son Jackson, who is 13 and swears up and down I am the dumbest parent on the face of this planet, is leaving for Little Rock today for a football tourney. Sad for him to go, but 1 down 2 more to go!
 My mother and I took Pookie to Crystal Bridges today, without Deuce I might add...Thank you LORD! We had a blast and it was amazing! I got asked to do a interview with Channel 7 news from LR. Being there was a great experience. Can't wait to go back.
 Patrick took Pook, Deuce, Grayson, Amber and I to dinner and of course before I even got a drink MY baby starts acting like I pinched him under the table and he wanted SCAN to know. So, my wonderful husband graciously takes both Grayson and Deuce to the car so we could have girl time. It is nice to be able to have a cocktail without a baby hanging on your neck, even if I did have to chug it like a sailor.
 By the time we madeit home my handsome devil was alseep and when I took him out the car he wrapped his arms around me and put his head on my shoulder and went back to sleep. He does stuff like that so I feel bad when I have bad thoughts when he is acting up!
 On another note...I think I am going to start up a support group or something in NWA for parents with children that have Craniosynotosis. I would like to get vendors to donate so maybe I can send families gift baskets...just a thought...woud like to make it happen though.
Night Nite

11/10 Morning Potty Pants

I woke up to the hand of Thor coming down hard on my face. Why must a baby, overgrown..but still a baby, have that much power. I felt like I was in bed with a midget wrestler. I almost thought I was going to have to DDT his little behind! Then, it hit me like a car payment on payday, POOP...The steamy STANK coming off of Mr. Poopy Pants was bad enough to make a grown man cry. YUCK. And, guess who has to change the diaper?? Yo Soy! Not at all because daddy was running around acting like he was late to a funeral. The man was fully clothed and had 20 minutes to spare but ran out of here like the clan was chasing him. I swear...
 It is all good. The kisses make up for it...From Deuce not my husband...I think I will put him on diaper duty for the rest of the week...and maybe slip Deuce some Karo Syrup :)

About Craniosynostosis

Craniosynostosis is a birth defect in which one or more of the joints between the bones of your infant's skull close prematurely, before your infant's brain is fully formed. When your baby has craniosynostosis, his or her brain can't grow in its natural shape and the head is misshapen.
Craniosynostosis can affect one or more of the joints in your infant's skull. In some cases, craniosynostosis is associated with an underlying brain abnormality that prevents the brain from growing properly.
Treating craniosynostosis usually means your infant needs surgery to separate the fused bones. If there's no underlying brain abnormality, the surgery allows the brain adequate space to grow and develop

CLICK TO ENLARGE

Cranial sutures and fontanels

Your infant's skull has seven bones. Normally, these bones don't fuse until around age 2, giving your baby's brain time to grow. Joints called cranial sutures, made of strong, fibrous tissue, hold these bones together. In the front of your baby's skull, the sutures intersect in the large soft spot (fontanel) on the top of your baby's head. Normally, the sutures remain flexible until the bones fuse.
Craniosynostosis signs in general
Signs of craniosynostosis include:

• A misshapen skull, with the shape depending on which of the cranial sutures are affected
• An abnormal feeling or disappearing "soft spot" (fontanel) on your baby's skull
• Slow or no growth of the head as your baby grows
• Development of a raised, hard ridge along affected sutures
• Increased pressure within the skull (intracranial pressure)

The signs of craniosynostosis may not be noticeable at birth, but they will become apparent during the first few months of your baby's life.
Main categories and characteristics
There are two categories of craniosynostosis:

• Primary craniosynostosis. If your baby has primary craniosynostosis, one or more of the cranial sutures become rigid, fusing the connecting bones and inhibiting the brain's ability to grow normally.
• Secondary craniosynostosis. With secondary craniosynostosis, your infant's brain stops growing, usually due to an underlying hereditary syndrome, allowing the sutures to fuse prematurely.

Common types and characteristics
The most common types of craniosynostosis are:

• Sagittal synostosis (scaphocephaly). Premature fusion of the suture at the top of the head (sagittal suture) forces the head to grow long and narrow, rather than wide. Scaphocephaly is the most common type of craniosynostosis.
• Coronal synostosis (anterior plagiocephaly). Premature fusion of a coronal suture — one of the structures that run from each ear to the sagittal suture on top of the head — may force your baby's forehead to flatten on the affected side. It may also raise the eye socket and cause a deviated nose and slanted skull.
• Bicoronal synostosis (brachycephaly). When both of the coronal sutures fuse prematurely, your baby may have a flat, elevated forehead and brow.

Rare types and characteristics
Two less common types of craniosynostosis are:

• Metopic synostosis (trigonocephaly). The metopic suture runs from your baby's nose to the sagittal suture. Premature fusion gives the scalp a triangular appearance.
• Lambdoid synostosis (posterior plagiocephaly). This rare form of craniosynostosis involves the lambdoid suture, which runs across the skull near the back of the head. It may cause flattening of your baby's head on the affected side.

Misshapen head may not mean craniosynostosis
A misshapen head doesn't always indicate craniosynostosis. For example, if the back of your baby's head appears flattened, it could be the result of your baby's sleeping on his or her back.
The "Back to Sleep" campaign, co-sponsored by the National Institute of Child Health & Human Development, encourages parents to put healthy babies to sleep on their backs to reduce the risk of sudden infant death syndrome (SIDS). But, this has also resulted in more cases of misshapen heads. In this case, the flattening is not serious because it's a result of positional molding, not craniosynostosis.

Babies with craniosynostosis, particularly those with an underlying syndrome, may develop increased pressure inside the skull (intracranial pressure). Their skulls don't expand enough to make room for their growing brains.
If untreated, increased intracranial pressure can cause:

• Blindness
• Seizures
• Brain damage
• Death, in rare instances

In addition, facial deformities that affect the middle of your child's face may cause:

• Upper airway obstructions, compromising your baby's ability to breathe
• Permanent head deformity
• Problems with speech and language development
• Poor self-esteem

 

11/09/11 Update

November 27, 2010 my beautiful baby boy was born. We named him Patrick Xavien Clayton II, nicknamed him Deuce. Deuce weighed 10.5 oz and was 21.5 inches long. He was perfect in every way. We never thought anything was wrong or anything could ever go wrong with this precious boy. At 9 months I took him to Dr. Shannon Jewell in Rogers Ar for a well visit and she told me that his head was abnormal and was too big. The Dr said she wanted to watch the growth of his head and to come back in 3 weeks. I went back 3 weeks later and she had another Dr come in and look at Deuce's head and they both agreed that Deuce needed a CT Scan. We took him to Mercy for a CT Scan and sat and waited for the results. I went in that Thursday with my two BFF's Shelley and Amber. I knew that whole week that I would get bad news. I just felt something bad and knew the Dr would give me what I thought would be bad news at the time. Dr Jewell came in the room and sat down and turned around and said "He needs surgery". She explained to me that my son has Saggital Craniosynostosis and that the sutures in his head had fused together too early. Basically his soft spot closed early. I cried, I couldn't even think of any questions to ask the Dr. Thank goodness Amber and Shelley were there to help me and ask enough questions to were I was informed well.
 I immediately googled Craniosynostosis and what it was and how did he get it. I was relieved to know that it wasn't something his father or I gave him. I'm not sure if I could of lived with myself had I given him something. We immediately researched and decided on Springfield Mo for his surgery with Dr Sami Khoshyomn (Known as Dr. Sami). We scheduled to meet with the Surgeon for November 8th. Rose, the nurse at Dr. Sami's office was very nice over the phone and gave me all the information I needed and was very thorough. Rose called me the next day and told me that Dr. Sami looked at Deuce's CT Scan and that they wanted to schedule us to see the plastic surgeon while we were in Springfield.
 On Nov 8th we went to see Dr. Sami. As soon as we walked in everyone was so welcoming and inviting. The doctors were very thorough and straight to the point. They took time to answer all our questions and was very informative. The staff was the same way. We are very pleased with our choice to pick Springfield St. Johns.
 At this point we have scheduled surgery for December 9th at 7:30am. The surgery will take about 4 hours total. We will be in the hospital about 4 days or until his eyes open from being swollen. The hospital in not part of our In-Network Insurance Coverage but the staff at the hospital is working hard trying to get the insurance company to approve this surgery. Keep your fingers crossed. :)