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.

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.

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
Expressive----- Severe Delay
Receptive------ Low Normal
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.

Tuesday, November 25, 2008

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.

Wednesday, November 5, 2008

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 **

Tuesday, October 28, 2008


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!