The Banded Boy.

Please help give Alvin a voice!

2011-12-17T17:05:00.000-08:00

http://jenn-eric.blogspot.com/2011/12/please-help-give-alvin-voice.html Please read this. It's real, and heartfelt.

Alvin's ETR results

2011-11-28T09:58:00.000-08:00

UPDATE: He's also been diagnosed with childhood apraxia of speech. Basically, his brain cannot create the correct paths to turn thoughts in to words.

On November 14, we took Alvin to have an evaluation for the local special needs preschool. Today, we got the results of that evaluation.

In the Vineland Adaptive Behavior Scales, a standard score is a 97, though anything from 91-100 is considered 'average/normal'. Alvins scores are:

Communication:      74    Adaptive level: Moderately low
Daily Living Skills: 71    Adaptive level: Moderately low
Socialization:           63    Adaptive level: Low
Motor:                     65   Adaptive level: Low

Overall Composite: 65    Adaptive level: Low

So, as you can see, based on this alone, Alvin is severely behind what is considered 'normal' for his age group. Then, they evaluated his Pre-School Language skills.

Auditory Comprehension: he's equivalent to a 2 year, 8 month old child. So, he's exactly a year behind there. For Expressive Communication, he's the equivalent to a 1 year, 4 month old child. So, he's 2.5 years behind there. These two give him an overall equivalent to that of a 1 year, 11 month old child. So, Alvin is severely behind. He'll be starting his special needs pre-school tommorrow. So our hopes are high that with that, he will start to catch up to his peers, but we do realize that he'll likely never be 'average'.

His genetic results

2011-02-28T09:46:00.000-08:00

As you can see in this picture of his genetic test results, Alvin has a c.2682delT mutation. This is what confirms the diagnosis of NF1.

Genetic Test Results

2011-02-09T07:38:00.000-08:00

So..I just got off the phone with the geneticist at Boston Childrens. It's affirmative. Alvin DOES have Neurofibromatosis Type I. *big sigh of relief*

Ya'll it's been 2 1/2 years of ups and downs. We think this and we think that. Now we KNOW! There can be no supposition. (No more anonymous assholes being jackasses cause they're bored.) We still have to wait until Alvin hits puberty to find out how bad this NF is going to get, but now we know what to look out for. Now getting him the scans/test etc every year wont be a fight. Why? Because he has a medical condition that requires them.

So what happens now? Well, not much different than what has been really. Once the pedi here on base gets the paperwork from Boston, we'll enroll Alvin in the EFM program. I have no clue what catergory he's going to be labeled and no clue how the EFM program works, but I'll soon find out! I'll post the doctor's notes/more information once we get it in the mail. I just couldnt wait to let everyone know!

Boston Children's NF clinic visit

2010-12-16T06:26:00.000-08:00

So yesterday we went to the NF clinic inside the genetics department at Boston Children's Hospital. Not quite as informative as we thought it was going to be, but really, there wasnt much more they could tell us. They 'highly believe' that Alvin has NF1, but he doesnt meet diagnostic criteria (yet). No surprise there, most of the diagnostic criteria for NF dont show up until adolesence or older. So, because Tricare and Navy are on our butts for a FIRM diagnosis, the NF clinic is going to send out for the genetic test for NF. However, a negative on that test doesnt mean he doesnt have NF. In that case, we'd re-evaluate once he'd have a second diagnostic criteria. The doctor is pretty sure that the test is going to come back positive though. Regardless of the outcome, we are to treat Alvin as if he DOES have NF1. Basically, as far as they are concerned, he does. Like the neuro in Akron, the doctor here has said that Alvin meets all the non-diagnostic criteria of NF. He has a big head, small body. He is learning disabled. He has spots on his brain. He has more than 6 6mm cafe-au-lait spots. Unfortunately, only ONE of those is a diagnostic criteria. He is showing signs of having a second sign: speckling in the folds of the skin. In Akron months ago, he had none. Now he has a few. The doctor said that most NF kids develop the 'speckling' sometime between 3 and 6 years of age, so him starting to have some isnt surprising. If he develops MORE of the speckling, then they could diagnose him based on that and the amount of spots he has.

Basically, we wait. Wait on the gene testing to come back in 2 months. I'm sick of waiting. I really am, but this will hopefully give us a solid answer. Normally they dont go to gene testing this early in NF. They prefer to wait to see if a second sign shows up. Being in the Navy though, we need an answer. The Navy wants Alvin in the EFM program if he has NF.

Anyway, some good news. Alvin is officially 35 inches talls and weighs in at an astounding 27 lbs! Woo hoo!

Referral APPROVAL

2010-10-14T07:55:00.000-07:00

Yes, you read that right. Our referral to the NF clinic at Boston Children's Hospital was APPROVED! No appeals process. Nothing. We did have to go to a review, but once they got all the information from the doctor here and the doctor back in Ohio, they approved the referral. This is a big deal because Boston Children's is out of network.

We go on December 15 to the clinic. I cant wait. Finally someone who KNOWS what neurofibromatosis is and I dont have to explain to them. So, look for updates AFTER then!

Yes, I know it's been a while.

2010-07-06T07:15:00.001-07:00

Due to a very rude person, I stopped posting on here. She will one day get what is coming to her and I hope I'm there to laugh in her face.

Anyway, I just dont have it in me to catch up on everything that's been going on since the last post. I just want to hit on the major development. Alvin had an MRI of his brain and orbits. The results came back with a few gliomas (tumors) and hundreds of UBOs (unidentified bright objects) all over his brain. According to the neurologist, "His brain lit up like a Christmas tree." Because there was cerebelluar involvement, she is concerned. Normally they dont see these UBOs in the cerebellum. His entire speech development center is also involved. Both with the UBOs and with small gliomas. She has pretty much said we'll be lucky to get a few more words out of him, but he most likely is never going to talk. He may surprise us, but it's not looking hopeful.

They are going ahead with the 'idea' of it being neurofibromatosis, but he has to have a few more things in order to be clinically diagnosed with it at this early age. Ya'll, that's NOT a good thing. According to my NF mentor, being diagnosed under the age of puberty normally means they have a more severe case of NF.

Just as a background, the most common effects of NF1 are:
Visual impairment/blindness
Optic gliomas
Lisch nodules on the retina
*Seizures
Headaches
*Brain tumors
Blood vessel defects
Learning disabilities
Mental retardation
*Macrocephaly (oversize head)
*Speech imparments
High blood pressure
*Cafe au lait spots
Fibromas
Scoliosis
Early or delayed puberty
*Digestive tract issues: pain, vomiting, chronic constipation or diahrea
*Delay in learning to walk or talk
*Short stature
Severe itching
Cancer
Pseduoarthrosis (false joints)
Bone deformities of the legs

Those effects marked with an * denote issues Alvin currently has. So you see, we're dealing with something that could potentially have a severe impact on Alvin's life. No, he hasnt been clinically diagnosed with it. He's not old enough and we havent been to the optometrist to see about the lisch nodules. If Alvin does have lisch nodules, then he'll meet the clinical definition for a child under puberty. Problem being, the nodules dont normally show up until after the age of 4. So, the neuro is saying to treat him like he does have NF1, because of all the markers so far, and if need be, wait til he's older to get the clinical diagnosis.

Ya'll I'm scared. I'm upset. We go back on Monday to the neuro to talk more about these gliomas and UBO's and to talk more about how to help with Alvin's other issues.

PS, to the bitch: Cant fake MRI results bitch. Get a clue before you spout your mouth off.

AKCH Visit #2 the EEG

2010-03-31T18:14:00.000-07:00

Let me just say that sleep depriving a 2 year SUCKS! After keeping him up til 11pm last night, I had to wake him up at 6am. Then, I had to deprive him of a nap. He wasnt allowed to sleep until he got into the EEG and they said it was ok. HoleyMoley! That sucked. Thanks so much to my Grandma who came with us and kept him awake on the 1.5 hour trip to the hospital. We'll know the results of the EEG on Monday.

Akron Children's Hospital Visit 1

2010-03-23T16:57:00.000-07:00

So, today we had two seperate appointments at Akron Children's Hospital. We saw Cardiology and NeuroDevelopment. The appointment with the cardiologist went extremely well. Dr Jacbonstein was wonderful with Alvin. He had an EKG, and an echocardiogram done while we were in-office. We are happy to say that EVERYTHING IS FINE with Alvin's heart! After the cardiology appointment we went to lunch, then to Alvin's neurology appointment.

First off, let me just say that Dr Victorio is AWESOME! She listened to everything we had to say. She was very informative and patient with everything we asked or had concerns about. After measuring all of Alvin's various cafe-au-lait spots. She talked with us about NF1, and about the high possibility that Alvin has autism. (This isnt a shocking theory. Autism has been mentioned before.)

She wants to perform more tests before she is comfortable with confirming a diagnosis of NF1. So, we have an MRI scheduled for next week. In the MRI, they will be looking for gliomas and/or for genetic deformaties of the brain. Alvin will be sedated for the MRI, which is scheduled to take ~2 hours.

For his 'staring spells' she has ordered an EEG. That has been scheduled for next week as well. Going to be a rocking good time attempting to keep him awake during the hour+ drive to the hospital. Dr Victoria also has referred us to an audiologist, a speech pathologist and an optometrist. The optometrist is supposed to be looking for lisch nodules in Alvin's eyes. Again, another marker for NF1.

Also next week, we have an appointment with the nephrologist(kidney doctor). We are seeing him due to Alvin's low amino acid count in his urine. So, I will be quite busy over this next week. However, we should have an honest, definative diagnosis shortly!

Follow up

2010-01-18T17:06:00.000-08:00

So, Dr McGrath called Friday with Alvin's amino acid panel results. They have a diagnosis, but they arent willing to tell me what it is just yet. Dr McGrath wants to consult with a nephrologist first. Yeah, so. Ok. He is supposed to call later this week to explain things. Let's hope he does. Or I'll get Dr Gross on his butt again.

I just wish we could get the diagnosis so we can switch the kids and I to Tricare Prime Remote and I could get Alvin a pediatrician here. Next week though. Regardless of whether Yale has gotten off their asses.

I'm a bad blogger

2009-09-14T08:07:00.000-07:00

Ok, so I totally forgot to put the results of his checkup on HERE. I put them on the main blog. *bad blogger, bad*

On September, 1, I took Alvin, to the NACC for his 18 month checkup. He weighed in at 21 pounds, 4 ounces, and was 30 inches long. He gained a pound in the last 2 months! Woo! He is still below the 5%ile in both height and weight, but is still in the 50%ile for head circumfrence. (I say he looks like a bobblehead. Eric doesnt like that so much.) He got 3 shots that day, and has 3 more to get next week. (He just got his 12 month shots. We have him on a delayed vaccine schedule.)

The doctor he is seeing now at the NACC, wants us to come back the end of this month to see if he has been able to get any results from the genetic microarrays. So, yeah. I get to call for that appointment this week sometime. If those results are negative, we are just going to back off for 6 months. Let Alvin get a little older, and see what happens.

Biopsy results

2009-08-28T08:36:00.000-07:00

Well, I finally got the phone call we have been waiting for. The doctor here at the NBHC was able to get ahold of Yale and get the results on Alvin's biopsy. I am happy to say that the test came back....

Negative! He doesnt have Hirschbrung's Disease. Now, just need the genetic results back so that we can go from there.

Alvin has a checkup on September 1, so I am hoping that we have the genetic results back by then. That way we can go from there.

Waiting

2009-08-26T06:11:00.001-07:00

Yes, waiting. The genetic testing was done two months ago; the biopsy was done a month ago. We still dont have results. I have called Yale repeatedly. Leaving messages with both humans and machines. I have never been called back. Yesterday, I involved the NBHC (Naval Branch Health Clinic). Hopefully, the Lt I talked to will be able to get further than I did. He said that he should know something within 24-72 hours. So, we wait yet again.

Alvin's biopsy

2009-07-25T09:03:00.000-07:00

The golytley enema and subsequent rectal biopsies went as well as could be. Alvin had an issue with not wanting the NG tube in, but once we got past that, he was tolerant of the admission. He had a rough time with the cleanout, but you couldnt have asked for a better child. He came through the anesthesia and biopsy with flying colors. Now, we just wait for the biopsy results.

Yale

2009-07-07T14:00:00.000-07:00

Ok, so we went to Yale both yesterday and today to have some testing done, and a surgical consult done. Yesterday went well. Beyond well. Both Eric and I were elated at how congenial the Genetics team was.

The geneticist took a detailed history of Alvin, including his in-utero period.He decided to run several tests, including basic metabolic, amino acids, organic acids, creatine, and a genomic microarray. That microarray itself tests for around 120 genetic disorders. He also is testing for a condition called Fragil X Syndrome. So, all in all, the genetics team is totally on the ball.

The geneticist has a couple of ideas on what could be wrong, but, he would rather test for everything he can. Just to be safe. He did confirm that Alvin most likely has neurofibrmatosis, but until he hits puberty, we wont know for sure. The NF has nothing to do with his poor growth, constipation, and develop delay. So, while we have one answer, the main problems are still undiagnosed. But,we should have test results in the next couple of weeks.

Now, on to today. It was a wasted trip. The surgeon didnt tell us anything we didnt already know. They want to do a rectal biopsy. Duh, we knew that 2 weeks ago. Eric asked if Hirschbrung's was the only thing they were testing for. The surgeon's response "well, we dont think he has that, but we are going to test to be sure. If its not that, then he is just backed up and needs cleaned out". Um...that is your official opinion????? WTF? So, its either something you dont think he has, or he is backed up. Really? Those are the ONLY two things it could be??? Bull. I have had it with the GI team at Yale. Completely had it.

Right now, we are hoping the genetics team comes through with a diagnosis, that way we dont have to deal with the GI team anymore. I will be calling Hasbro tomorrow to talk to the GI there about everything that has been done so far and see what he has to say.

Edited to add: Alvin will be having the biopsy sometime in the next few weeks.

Appointments, appointments, appointments

2009-06-26T17:00:00.000-07:00

Ok, so we have the genetics appointment scheduled for July 6th. On July 7th, we have to go to have an abdominal x-ray done, then meet with the surgeon to discuss the biopsy. From what we understand, the biopsy will either be performed on Thursday or Friday of that same week. So, that week will be busy, busy, busy. Please, keep Alvin in your prayers. He really needs them.

Getting somewhere

2009-06-22T17:07:00.000-07:00

Well, we have a genetics appointment. July 6, we will be going down to Yale Genetics. We were very lucky to get that appointment. The geneticist only sees new patients once a month, and they were full until the end of September. Luckily, someone one cancelled and they are able to get us in in just two short weeks. So, here is to hoping that the command will allow Eric to have that day off.

Also, GI is going to perform a rectal biopsy on Alvin. Great, he is going to have to go an be put under and intubated again. Fun. Here is to hoping that can be scheduled while Eric is in port. It would suck to have to go through that without Eric being home.

But, we are on the road to finding out, once and for all, what is wrong with Alvin. It's only been a year, but whatever.

A small step in the right direction

2009-06-11T11:59:00.000-07:00

Ok, so today was a follow-up at Yale. They did the standard questions and then asked what all we have been doing since the last appointment. So, I told them. We had been to Hasbro for a second opinion. Boy, that got the fire lit in Yale's pants. So, they asked all sorts of questions on what Hasbro thought, etc. Well, well. Looks like Yale might actually decided to be serious about this now and stop blaming me!

Anyway, they have taken a complete medical history of Alvin. It was then that the GI noticed the cafe-au-lait spots Alvin has. He asked how many Alvin had, which he has 16. So, that got the GI's eyes huge. Combine that with Alvin's abnormally large head and chronic constipation and well, we are off on a theory. What that theory is, they wont exactly say. But, they have scheduled Alvin for a barium enema with contrast next week, and have given us referrals to an endochronologist, a neurologist, and a geneticist. So, at last, we are on the track to figure this crap out. (No pun intended)

So, please pray for an actual answer sometime soon!

Blood test results

2009-05-18T20:12:00.001-07:00

Well, the blood test results are in. Everything was normal. Some of the liver enzymes were high, but, they feel that that is just how his enzymes are. As they arent high enough to indicate disease.

So, now we continue on with the no-dairy/high fiber diet until the end of June. Then, we will go back to Hasbro to go from there. As for the diet, so far. No results. He is pooping about every 3 days, which I guess is an improvement over every 4. But, what comes out is wider than previously. So, its not a miracle cure.

Let the waiting begin.

Hasbro Children's Hospital

2009-05-01T18:16:00.000-07:00

Warning: This post discusses bodily fluids/etc.

Well, we took Alvin to Hasbro Children's Hospital in Providence, RI today. He had an appointment to meet with GI there for a second opinion. (Since Yale has maintained that I am not feeding him and he would gain weight if I just fed him).

There we met his new GI, Dr. Alexander. Dr Alexander is a wonderful man. He sat down and listened to Alvin's entire history before saying anything. He asked alot of questions and gave us the decision on what was more important to us right now: the failure to gain weight or the constipation. Dr Alexander was glad to see that we chose to treat the constipation. He fully believes that the failure to gain weight it due to the length and severity of Alvin's constipation.

So, starting tomorrow, we start on a totally new therapy. We are going to completely flush Alvin's system via enemas. (3 given over 3 days). Then we are going to start him on a dairy-free diet. This is to rule out lactose intolerance as a cause of the constipation. Dr Alexander is also running like 35 different blood tests, including Celiac, and other diseases. The test results for those will be back in around 10-14 days. So, we are to follow the new non-dairy/high fiber diet until we get the blood test results back.

After that, where we go is dependant on the test results. If they find nothing, then we will stay on the new diet for 8 weeks to see if his constipation lessons and he gains weight. They will also do more testing if these blood tests come back normal. Dr Alexander told us today that they WILL find out what is wrong with Alvin. They are very concerned about his chronic constipation. So yay. Finally. Someone who can admit they dont know what is wrong, but are willing to find out.

April Photostudy

2009-04-24T12:36:00.000-07:00

The picture on the left is when he started the cranial banding in November, and the picture on the right is his picture taken just a few days ago. Notice how much his head has rounded out.

Its been a while

2009-03-31T09:30:00.001-07:00

I know. I am sorry. Things have been hectic around here. My main blog has some details on things going on with Alvin. So, look for updates over there for the past couple of months. However, I promise I will actually update THIS one from now on.

Here are his new helmet designs.

Bloodwork Results

2008-12-30T15:05:00.000-08:00

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.

December 23rd's visit to Cranial Tech

2008-12-23T14:36:00.000-08:00

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.

Developmental Assessment

2008-12-12T09:22:00.000-08:00

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.

Alvin's Photostudy

2008-11-25T08:54:00.000-08:00

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

Day 3

2008-11-20T07:14:00.001-08:00

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.

He has been banded!

2008-11-18T10:04:00.000-08:00

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

Cranial Tech-Visit 1

2008-11-05T04:46:00.001-08:00

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.

Background Information

2008-11-04T05:33:00.000-08:00

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 **

Welcome

2008-10-28T09:25:00.000-07:00

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!