Tuesday, December 30, 2008

Bloodwork Results

The bloodwork results finally came back. Thyroid is normal, liver is normal, white cell count is normal. Most everything is normal. Notice I said -most- everything. Alvin's amylase count is abnormally low. What does that mean? That was the test for Cystic Fibrosis. So, as of 4pm this afternoon, Alvin has been provisionally diagnosed with Cystic Fibrosis. We will be going to Yale-New Haven's Pediatric Specialty Center to have a sweat test done to confirm.

I am numb. We were prepared for bad news. But, no amount of preperation can prepare you for actually hearing a doctor tell you, "I believe your son has Cystic Fibrosis". SLAM. Like a knife right through my heart.

I dont have to heart to post any more right now. It seems that this blog has went from a simple chronological following of his cranial banding, to a chronological epic of his life. I will leave you all with this:

Hug your children. Hug your spouse. Hug your pet. Love them all. Pray for those of us that might lose our loved ones.

Bloodwork Results

The bloodwork results finally came back. Thyroid is normal, liver is normal, white cell count is normal. Most everything is normal. Notice I said -most- everything. Alvin's amylase count is abnormally low. What does that mean? That was the test for Cystic Fibrosis. So, as of 4pm this afternoon, Alvin has been provisionally diagnosed with Cystic Fibrosis. We will be going to Yale-New Haven's Pediatric Specialty Center to have a sweat test done to confirm.

I am numb. We were prepared for bad news. But, no amount of preperation can prepare you for actually hearing a doctor tell you, "I believe your son has Cystic Fibrosis". SLAM. Like a knife right through my heart.

I dont have to heart to post any more right now. It seems that this blog has went from a simple chronological following of his cranial banding, to a chronological epic of his life. I will leave you all with this:

Hug your children. Hug your spouse. Hug your pet. Love them all. Pray for those of us that might lose our loved ones.

Thursday, December 25, 2008

Merry Christmas

Santa brought Emali a Tinkerbell guitar.
Santa brought Erin a Littlest Pet Shop kitty.

Dad and Sammy gave me and Eric knives. Love them!


Alvin trying to get his sister's toy.




Tuesday, December 23, 2008

December 23rd's visit to Cranial Tech

Yes, that is a new design on his cranial band. The other started peeling off, so we took it the rest of the way off and put this new one on. Its Chip and Dale. The red is more sparly than it shows in the pics.

Anyway, to the visit. There is definate improvement in his head shape. He is getting a very slight roundness to his posterier and he is filling out in his forehead. Yay! Good news for once! Woo hoo! We got back again in 2 weeks.

In other news, we finally got his appointment to the see GI scheduled. He goes there on February 4th. Yes, the day before his bday. (and my actual bday). We get to spend it in a doctor's office. What fun. But, at least we got the appointment.

Its been a while

The girls at Chapman Falls at Devil's Hopyard State Park


Chapman Falls at Devil's Hopyard State Park

The snowman they made with all the snow we got.


Emali, Eric, and Erin with their igloo.



Charley enjoying the almost foot of snow we got.

The snowman cake the girls helped me make.


Finally, I caught a smile on camera. (Somewhat.)


Our tree. Yes, its real.

Sunday, December 14, 2008

Happy Holidays

http://www.123greetings.com/events/christmas/merry_christmas/christmas77.html

Friday, December 12, 2008

Developmental Assessment

While I understand that this really has nothing to do with his cranial banding, it is related to his overall development, so I am sticking this in Alvin's blog. That, and I am filling the normal blog with Alvin's medical issues, so, Alvin's blog is going to be all about him.

So, anyway, Connecticut's Birth to Three program sent an RN and a teacher to the house today to do a developmental assessment on Alvin to see if he qualified for developmental services. They test in 7 different areas: Adaptive, Cognitive, Communication (both Expressive and Receptive), Physical (both Gross and Fine Motor Skills), and Social/Emotional.

Adaptive development is sometimes referred to as self-care or daily living skills. The child may use skills that he or she has already developed, or it may be necessary to acquire new skills.
Adaptive development refers to the ability of the developing child to care for him or herself in age appropriate ways. Mastered skills progress in the area of feeding, for example, from feeding self through scooping up food to using two fingers pinched together to pick up food, and later using a spoon or fork.

Cognitive Development involves the mental and intellectual growth of the child. Like with other areas of development, cognitive development occurs in stages. From the very early sensorimotor stage in early infancy where a baby learns about his or her environment through the senses, to the capacity for abstract thinking found in the formal operational stage of adolescence and adulthood, children progress through these stages depending on level of maturity, experience, and other factors such as interaction with caregivers. Mastery in various tasks of learning, memory, reasoning and problem solving are evidence that a child's cognitive development may be on target.

Expressive Communication involves sending a message to another person to make something happen. Receptive Communication is receiving that message and making it happen.

Physical Development is a person's capacity to move their body depends upon the development of motor abililties. These abilities, or skills, involve the use of large body movements (gross motor skills) and those that require small movements (fine motor skills).

Social Development is the process of development in which a child learns the skills, rules and values that will enable him or her to form connections and function among family members, peers and members of society. Emotional development involves the ways children understand, express and learn to regulate their emotions as they grow.

So, now that you know all that. Let me show you how Alvin ranked in each of those.

Adaptive----- Severe Delay
Cognitive----- Low Delay
Communication:
Expressive----- Severe Delay
Receptive------ Low Normal
Physical:
Gross Motor---- Moderate-Severe Delay
Fine Motor----- Severe Delay
Social/Emotional-- Low-Moderate Delay

So, what does this mean you ask? It means that Alvin is now going to have an occupational therapist, a physical therapist, and a speech pathologist added to his already impressive list of providers. It also means that he is eligible in every way to praticipate in the Birth to Three program. Hopefully we will be able to help work some of these severe delays into low normals. *cross fingers*

Thank you to all those who keep reading and keep this poor sweet boy in your prayers.

Developmental Assessment

While I understand that this really has nothing to do with his cranial banding, it is related to his overall development, so I am sticking this in Alvin's blog. That, and I am filling the normal blog with Alvin's medical issues, so, Alvin's blog is going to be all about him.

So, anyway, Connecticut's Birth to Three program sent an RN and a teacher to the house today to do a developmental assessment on Alvin to see if he qualified for developmental services. They test in 7 different areas: Adaptive, Cognitive, Communication (both Expressive and Receptive), Physical (both Gross and Fine Motor Skills), and Social/Emotional.

Adaptive development is sometimes referred to as self-care or daily living skills. The child may use skills that he or she has already developed, or it may be necessary to acquire new skills.
Adaptive development refers to the ability of the developing child to care for him or herself in age appropriate ways. Mastered skills progress in the area of feeding, for example, from feeding self through scooping up food to using two fingers pinched together to pick up food, and later using a spoon or fork.

Cognitive Development involves the mental and intellectual growth of the child. Like with other areas of development, cognitive development occurs in stages. From the very early sensorimotor stage in early infancy where a baby learns about his or her environment through the senses, to the capacity for abstract thinking found in the formal operational stage of adolescence and adulthood, children progress through these stages depending on level of maturity, experience, and other factors such as interaction with caregivers. Mastery in various tasks of learning, memory, reasoning and problem solving are evidence that a child's cognitive development may be on target.

Expressive Communication involves sending a message to another person to make something happen. Receptive Communication is receiving that message and making it happen.

Physical Development is a person's capacity to move their body depends upon the development of motor abililties. These abilities, or skills, involve the use of large body movements (gross motor skills) and those that require small movements (fine motor skills).

Social Development is the process of development in which a child learns the skills, rules and values that will enable him or her to form connections and function among family members, peers and members of society. Emotional development involves the ways children understand, express and learn to regulate their emotions as they grow.

So, now that you know all that. Let me show you how Alvin ranked in each of those.

Adaptive----- Severe Delay
Cognitive----- Low Delay
Communication:
Expressive----- Severe Delay
Receptive------ Low Normal
Physical:
Gross Motor---- Moderate-Severe Delay
Fine Motor----- Severe Delay
Social/Emotional-- Low-Moderate Delay

So, what does this mean you ask? It means that Alvin is now going to have an occupational therapist, a physical therapist, and a speech pathologist added to his already impressive list of providers. It also means that he is eligible in every way to praticipate in the Birth to Three program. Hopefully we will be able to help work some of these severe delays into low normals. *cross fingers*

Thank you to all those who keep reading and keep this poor sweet boy in your prayers.

Saturday, December 6, 2008

Introducing Charley!







Thursday, December 4, 2008

uggh part 2

Around 6pm last night, Alvin started screaming bloody murder. I went into his room where he was taking a nap, and found him with his legs drawn up to his belly, his face beet red, and he just shrieking. I checked his diaper, and it was full of blood. So, I rushed him to the ER in New London. They took an X-ray and an Ultrasound, but found nothing definate. They transfered us to Yale Children's Hosptial, where they did another Ultrasound. They think that a tiny part of his small intestine might have slipped into his large intestine, but due to all the impacted fecal material, they cant be sure. So, Alvin was given an enema to remove the fecal material. He is home right now on a provisional basis. Once his bowels are clear, we have to go in for another ultrasound.





Wednesday, December 3, 2008

Ughhhh

Went to the pediatrician yesterday for Alvin's followup to check his weight.

He ~ lost ~ weight. Ugh. We had added rice cereal to his bottles, put him on a higher calorie formula, gave him rice crackers, tried every baby food we could think of. and he LOST weight.

So, they took some blood. (Wonderful, taking a 9 month old to get bloodwork done). They are going to run a CBC, and a chem panel. Which is going to include his pancreas, his thyroid and some liver tests. We are also being refferred out to a pediatric gastroenterologist, and an endochronologist. Wonderul.

The pediatrician wants to rule out a hyperthyroidism and cystic fibrosis. HOLY CRAP! Cystic Fibrosis. Ugh..... She is also worried about something called pyloric stenosis. Though, she says that we would have known long ago if he had that. Also being tossed around is Hirschsprung's Disease.

Grr. I just want to know what, if anything, is actually wrong with him.

Monday, December 1, 2008

RIP Lilly

You were loved so very much in your short life.



Lilly July 2007-December 1, 2008

Tuesday, November 25, 2008

Alvin's photostudy

The results have been posted. Check out his blog.

Alvin's Photostudy

Well, its officially been a week since Alvin was banded. He is adjusting well to it. He still gets upset when it's time to lay down with it on, but other than that, he is doing well.


We have his photostudy back. So here goes:





Alvin is a 9 month old male referred to Cranial Technologies for treatment of his brachycephaly. He presents with left occipital flattening, right frontal flattening, and associated facial asymmetery. He has an ear shift with the left ear anterior to the right and an increased head width to length ratio.








Increased posterior head height and a sloped forehead.





Left occipital flattening; right frontal flattening; increased head width to height ratio; left eye and cheek anterior to the right












Alvin's Photostudy

Well, its officially been a week since Alvin was banded. He is adjusting well to it. He still gets upset when it's time to lay down with it on, but other than that, he is doing well.


We have his photostudy back. So here goes:





Alvin is a 9 month old male referred to Cranial Technologies for treatment of his brachycephaly. He presents with left occipital flattening, right frontal flattening, and associated facial asymmetery. He has an ear shift with the left ear anterior to the right and an increased head width to length ratio.








Increased posterior head height and a sloped forehead.





Left occipital flattening; right frontal flattening; increased head width to height ratio; left eye and cheek anterior to the right












Thursday, November 20, 2008

Day 3

His helmet once we decorated it


So, he is still having fits while the band is on. But, it is getting better. We are up to 5 hours on, 1 hour off. We start going down for a nap today with it on. Then, to 7 hours on, 1 hour off tommorrow. Then finally on Saturday night, he will go to bed with it on and on Sunday be wearing it for the full 23 hours a day.

Tuesday, November 18, 2008

He has been banded!

So, today was the day. He will wear the band for approx. 14 weeks. That is all dependant on how well this works.

Friday, November 14, 2008

New Puppy Pics!

One of these little guys will be ours!

















Thursday, November 13, 2008

9 month checkup

Well, today was Alvin's 9 month check up. Wonderful.

He is 26 1/2 inches long (<5th %ile) and weighs 16 pounds, 9 ounces.(<5th %ile). His head circumference is 17 1/2 inches.(25th %ile).

So, what does this mean? Well, he is a little guy, with a big head. But, it also means that he is severely underweight. So, we have 3 weeks to put weight on him, or he gets a feeding tube and diagnostic tests to see what is wrong with him.

Also, he was referred out to 2 different developmental specialists because of his delay in development. Bleah.

I dont even want to think about all this right now.

Wednesday, November 12, 2008

Um...where'd ya go?

Nowhere really. Just been insanely busy around here. Eric had a boat holiday. Which, for those not in the know, means that the boat had some days off. No work. Still had to pull duty, but hey. That isnt so bad to have your hubs around for the better part of 5 days.

So, what all have we done in the past week?

We are furiously cleaning and organizing the house. Some people do this in the spring. I tend to do it towards winter when I notice that the night comes way too close to when Emali gets off the bus from school. The doldrums set in and I realize that for the next 5 or so months, our house will be our oasis from the ickiness that is sure to creep in outside. I love snow, but I hate the dark and cold.

Also, Eric's Dad and Step-mom have hinted that they are coming for Thanksgiving. So, that will be interesting. I had already scoured the stores to find a turkey just the right size for the 5 of us. (did you know its virtually impossible to find a turkey under 10 pounds?). Now, I have to go on the search again, cause the 6 pounder I actually did manage to find wont be big enough. Now, I could just get one of those monster 14+ pound turkeys. Problem with that. I have a 15in wall oven. It just wouldnt fit.

Then Saturday, I went to the Lia Sophia party at Samantha's house. MMmmmmmmm, cheese and wine and jewelry. Well, ok. The jewelry part really isnt all that much my favorite, but the brie she had was! Yummy. I did end up ordering a slide that perfectly matches my engagment ring and a necklace with a very interesting pendant. Then, it was off to shop. BY MYSELF! woo hoo! No kids for a whole afternoon. Dont get me wrong, I love my kids, but sometimes, you just need a break. Time for yourself where you dont hear "Mommy, mommy, MOMMY!"

Sun, Mon, and yesterday. Kind of a blur. I really dont remember what we did. But, I know it involved cleaning and relaxing. The one thing I do remember is. We got Emali's hair cut. She looks wonderful.

Wednesday, November 5, 2008

9 months old already


For an update on his progress, go visit his blog. The link is on the right. or, just go to alvin-rice.blogspot.com

Cranial Tech-Visit 1

So, we went to Cranial Technologies yesterday and started on the journey of cranial banding. We had a nurses consultation, then a head scan with digital imaging, then off to the photo study and "headsicling".





I feel bad for my little man. He -hates- his head being messed with and that is all they did yesterday.
Getting his consultation done. He was happy at this point.




The horrid stocking they had to put on his head to do the digital imaging and all that. He hated it.


Waiting on the photostudy to begin.

Tuesday, November 4, 2008

Background Information

Well, since some of you might be new to his story, or some may just not know fully. Here is the background to Alvin's story.

He was born almost a month early and after severe circumstances during his pregnancy. Around 2 months of age, the Pediatrician noticed that Alvin could not move his head to the right, and that his head was becoming increasingly more deformed.

This led to many hours of "tummy time" per day. Up to 8 hours on some days. No marked improvement was made. In fact, his head only got worse. So, then it was off to Dr John Persing at Yale Medical in New Haven. Dr Persing is a craniofacial specialist.

Once their, he diagnosed my baby with severe Plagiocephaly and Brachycephaly. This was partially being caused by his Torticollis. Their suggestion on treatment was a DOC Band. So, this diagnosis began the 5 month fight to get Tricare to pay for this treatment. They refused and continue to refuse.

So, today begins Alvin's journey. We are paying for his treatment out of pocket. Today we are going to have a head cast made and Alvin to have a full work up on any other underlying issues he may have. Cross you fingers, this might get bumpy.




**For more information on Prevention of head deformities, please visit: Heads Up Baby and Cranial Technologies **

Monday, November 3, 2008

What the f%^k? Seriously.

Ok, I am pissed. Whole heartedly pissed off. Why?

The ex, who has not paid child support in a couple of years, calls yesterday to inform me that he has moved to Hampton Roads, VA. He sold his horses, bought a Ford 150 and a pop up camper and moved to VA. How the hell does he afford all this crap? Simple, he doesnt pay support. He hasnt even called to talk to the kids since April. And that was at 11:30 at night.

So, yeah, he is training to be an aviation mechanic. He has a free and clear truck, a camper and tons of cash in his pocket. (his words). I have nothing from him for the girls. It pisses me off. The girls are well taken care of, so its not like they are lacking but still. This makes me so angry.

Grr..

Sunday, November 2, 2008

New Pics







The entire album can be seen at : http"//fiestydink.shutterfly.com Enjoy!



Tuesday, October 28, 2008

Welcome

So, I am starting this blog as a way for people to follow Alvin's treatment and development, without taking over my entire blog.

So, we go on November 4th to Cranial technologies to get his head scan and get fitted for the DOC band. Then, we will be picking up the band on November 18th, if not before. so, here we go!

Monday, October 27, 2008

Finally, some good news

For those of you that follow Alvin's story.

There is hope on the horizon. The doctor that will be seeing him for the cranial treatment has agreed to donate his time. (IE, no doctor's fee). Cranial Technologies has agreed to a payment plan for their fees and NMCRS is willing to foot for $1000 of the bill.So, instead of a giant $10,000+ looming over our heads. Its looking like we are going to be able to do this for 5 payments of $900. So, finally, my baby is going to be getting the treatment he so desperately needs. Coming up with $900 a month isnt going to be easy, but its sure going to be easier than 10 thousand up front.

Monday, October 20, 2008

Happy Anniversary

To me of course!




So, it has officially been 1 year since Eric and I were married. Sheesh. It sure doesnt feel that long. (granted, there are times when it feels ALOT longer).

Happy Aniversary Eric. I love you.