Gavin Divino, our little Bambino!

Ah.. finally, I've sat down to write an update, more or less on Gavin! But I'll fill everyone in on Jules and Brennon! Get a cup of coffee, sit down and be prepared to be informed.... (read: this is long) (Late night correction: I originally wrote quite a bit on Jules and Brennon, but this is the longest email in history, so I took it out. I'll update our blog soon on everyone, for now, we'll focus on GMan. It's still long. I feel the need to share EVERY detail. :)

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We had Genetic Testing done for him recently. We got preliminary results today. We'll officially see the Geneticist (?) in May, but we can get some answers in the meantime. Gavin has 3 chromosones that are *flagged* as abnormal. What I know so far...

Chromosone 22. If you remember back to science class, there is the little circle, with arms, making a chromosone. The arms off the chromosone can be altered, and different parts can be missing, all of it, or it can be mutated. This particular arm they are seeing is the Q arm- the long arm. The end of it is missing or mutated- that we'll know for sure soon, it won't change anything but depending on the results we'll know if we should have Juliana tested for the reccessive gene- for future conception *stuff*. From what I understand Kurt AND I have to carry the gene, which would be extrememly rare, to have it be missing. Or if it's mutated neither of us have to carry the gene, and it is enviromental- meaning no one ever will be able to explain. However, it doesn't change his diagnosis. If Kurt and I both carry the gene, it could have been passed to both the female and the male, however affected one and not the other. SO, it's important to find out if Jules can pass that on to her children.

First off, let me mention that as of 2005 there were 300 documented cases in the US. So, as much info as I have been given on it, found, ect, I haven't been given, because it's just not out there, yet. For goodness sakes, it just got a name.

For quite sometime it's been called the 22q13 Deletion Syndrome, recently, it was named the Phelan-McDermid Syndrome. It's a rare genetic anomaly caused by the absence of genes at the end of the long-arm of the 22^nd chromosome. There is another syndrome involving the missing middle piece, called I believe 22q11 Deletion Syndrome, that's much more common, but unfortunately, not what we're looking at. There is a pretty wide range of symptoms (I've listed) in people with the syndrome, but most have moderate to severe physical and intellectual developmental abnormalities and lack the ability to communicate easily.

Most have delayed speech, problems with eating, sleeping and emotional stability. Most children fall on the Autism spectrum as well. We are dealing with all of the above currently. Our eating issues are getting better though! :)

Physically, people will have heart issues and kidney issues, which we know Gavin had (his left kidney doesn't function more then 50%), his PDA at birth with his heart wasn't your typical run of the mill PDA, and he still has a murmur, but is also quite common is premature infants, however, we're reminded my our doctor that while Gavin had those issues, it wasn't the typical issue, it was always a little different.

Hypoparayhyroidism... he was VERY close to being the first Neonate (preemie) with those issues documented in the medical journals. This is a common symptom of this syndrome.

A Cleft Palate or abnormal palate. We were told recently to see someone about his palate that comes to a point, not just high arch, but a wierd point and it's still soft. So, that explains that, possibly.

Vision impairment... we've had the issues.

Hypocalcemia.. again, issues we've dealt with that we're quite rare.

Poor bone growth, remember how bowed his legs were on an xray and someone called it rickets? This could explain it.

Poor tooth growth.. his teeth came in wierd and we were told to see a doc this year.....

The list goes on. And I say, people have these things, right? Then the doctors say, *Not all at once, that is when suspicion is raised*... okay then. So, that is the 22nd chromosone. There are two others flagged, and we know nothing about them yet. Apparently one affects brain growth, which we've known his little brain wasn't growing exactly how it should, we do have a MRI scheduled for the end of April to see the status on that. The other one shouldn't affect alot.... we'll see. All of this will take a while to get through, but as we get info that is prevelent, I'll surely update!

As usual, thanks so much for everyones support and thoughts. I talk to many of you and get the *Well, I didn't know that!* HA! Now everyone does! ;)

Nonetheless, it's not a terminal illness, he still is the coolest kid that has graced the earth, and he'll continue to impress us daily and for a life time to come. We've met these issues in the past with great perserverence and dedication, this will be no different! A little something we learned recently...

=If someone forces you to go one mile, go with him two miles. Matthew 5:41 = In these times a Roman soldier could force a civilian to carry his often heavy pack. He was expected to do it with little resentment.

Life has forced us to go above and beyond, carry packs sometimes we shouldn't have to. We've gone our mile, and we're going for two, and will continue marching on up that mountain. Without questioning why. This above and beyond stuff has beautiful views that I could have never imagined.

-Deanna

The Latest....

I thought I would send an update on Mr. G. He's still the cutest blonde ever...

That is it!

No, really, all is going as expected. We got news today that our last evaluation/diagnosis process is getting moved from October to August!~ We've had our therapy team diagnose, the Kaiser specialists and ped diagnose, now we need this specific group of specialists to diagnose to insure that Gavey gets treatment and services within the Douglas County school district. He is eligible for preschool as of Feb 1... Imagine Gavin on his first day of big kid school!? How cute. Anyhow... we were having to wait until October for it, and now got the call today, our therapist pulled some strings and got a evaluation sooner! This will be his final diagnosis appt and technically, 3 out of the 4 people on the team have already approved the diagnosis and the last person is well aware of his issues, so it's been speedy...so finally we can start normal treatment for him.

We found a program here in CO that is life skills classes broken into individual classes and workshops vs. a school situation that lasts minimum 20 hours per week. The schools here that are Autism specific require a commitment of 1 year. With him only having 7 months before he can start school, I don't want to overload him prior to the school experience. Douglas County will put Gavin in a mainstream class with his able peers to start, he'll have his own aide that will help him through the day from the start of school right down to getting in the car with us at the end of the day. I told him he's lucky to have a personal assistant in preschool! If preschool doesn't go well, we'll discuss Special Ed part time, mainstream part times, but that is a way down the road and Kurt and I have only begun... I keep telling everyone, just wait, we'll have him doing wonderfully in no time.

So, with that said, our ideal course of action will to have Gavin in the Breakfast Club class 7.5 hours per week, he'll see our therapists here in the house 3 hours a week, and we put in about 25 hours a a week with individual therapy we provide which totals 35+ hours a week. SO, we're close to ideal! We'll also be hiring a home trainer to come in and spend a day to day and a half with us to do additional therapy with Gavin where and when needed. Things seem to get better daily, but then by the weeks end, he's developed another inappropriate behavior to be worked on.

We are working on social skills with him alot lately. He is not a fan of many people. We've had countless people tell us that most autistic kids can't form relationships very well, if at all. I figured that meant friends, but apparently many kids take that to siblings and other family members... that just makes it hard. There are just times that I need to go get milk, it's not an option, if he isn't throwing up from the stress of the store, he's destroying everything... again, this is where social skills come into play.

He's not eating either, or sitting down to eat. Again, we're reminded that alot of autistic kids walk and eat. He has restricted himself to a banana diet... bananas all day every day all the time. He'll mix in a crunchy carb obsession every once in a blue moon, ie Wheat Thins.... but that is about it. So, we're going to see a feeding specialist soon to help us with his sensory issues that are making his eating so difficult.

His speech is going well... he is saying "bye" now... which made our therapist cry the other day. She said that we work day and night, she hopes that her being here to help him works, but you never know, then he says *bye* on cue, and it's worth all the hard work. He's been saying it for a little while, she just heard it this week however. He's communicating with his signs well and pretty decent eye contact... so we're really thrilled with his progress in that department right now.

So, all in all, he's good. Just as sweet as can be! He completed his first puzzle today! Made us cry. Even Juliana gave him a big hug and clapped for him. Normally he's too frustrated to get it done.... so that was a great achievement for him!

Don't forget: 20% off everything until June 25th! www.marykay.com/ddivino
All profits go to Gavin's Early Education Fund! Thanks for the recent orders in the month of June!

Gluten Free Diet

Is just not that easy.... do we carry this list everywhere?

Following are examples of foods that should be avoided when eating gluten-free.

Beverages - Ovaltine, malted milk, ale, beer, gin, whiskey, flavored coffee, herbal tea with malted barley

Milk - Malted milk, some commercial chocolate milk, some nondairy creamers

Meat, Fish, Poultry - Prepared meat containing wheat, rye, oats, or barley; tuna canned in vegetable broth

Cheese - Any cheese product containing oat gum, some veined cheeses (bleu, stilton, roquefort, gorgonzola)

Potato or Other Starch - Regular noodles, spaghetti, macaroni, most pachaged rice mixes, seminola, spinach noodles, frozen potato products with wheat flour added

Cereals - All cereals containing wheat, rye, oats, or barley; bran; graham; wheat germ; durum; kaska; bulgar; buckwheat; millet; triticale; amaranth; spelt; teff; quinoa; kamut

Breads - All breads containing wheat, rye, oat, or barley flours and grains listed above

Flours and Thickening Agents - Amaranth, wheat germ, bran, wheat starch; all flours containing wheat, rye, oats, or barley; buckwheat; spelt; quinoa; teff; kamut; millet

Vegetables - Creamed vegetables, vegetables canned in sauce, some canned baked beans, commercially prepared vegetables and salads

Fruits - Thickened or prepared fruits; some pie fillings; raisins and dried dates that have been dusted with flour

Fats - Some commercial salad dressings, wheat germ oil, nondairy cream substitutes, most commercial gravies and sauces

Soups - Most canned soups and soup mixes, bouillon and bouillon cubes with hydrolyzed vegetable protein

Desserts - Commercial cakes, cookies; pies made with wheat, rye, oats, or barley; millet, amaranth, buckwheat, spelt, teff, quinoa, kamut; prepared mixes; puddings; ice cream cones; Jell-O instant pudding; cream fillings; products made with brown rice syrup

Sweets - Commercial candies dusted with wheat flour, butterscotch chips; flavored syrups; sweets containing malt/malt flavorings; some brown rice syrup; some corn syrup

Miscellaneous - Curry powder, dry seasonings mixes, gravy extracts, meat sauces, catsup, mustard, horseradish, chip dips, most soy sauce, some distilled white vinegar, instant dry baking yeast, some cinnamon, condiments made with wheat-derived distilled vinegars, communion wafers/bread, some alcohol-based flavoring extracts

One on One on One on One on One

That is all we hear. But, I guess I understand. It is recommended that any therapy that Gavin starts needs to be practiced no less than 25 hours a week, one on one, and up to 40 per week being the most beneficial, again, one on one.

That is why they are recommending outside therapy. As long as there is a phone to answer, dishes to clean up, ect... we can't possibly do so at home. We kinda thought that Jules schooling would be less expensive, so we'll put her in school, which she is VERY ready for and then be home with Gavin and work for 5-7 hours a day. Then they say, he'll learn better from someone that isn't family. UG! Kinda puts you a position.

Oh well... I guess we know where we are headed... and that is school for Gavin! I think aside from being good for him, he'll enjoy it.

Lately he's been a bit agressive, but based on our journaling, it is that time in the behavior cycle he seems to have. Juliana isn't the most sturdy little person, and Gavin knows that he can easily push her over. And does. He's pretty mean to the dog, thankfully she just lies there. When he's like this he's generally *sensory seeking* so if he does some jumping on the trampoline, or deep pressure activities, that can usually help it. It is just hard to see him mean, because he isn't meaning to be that way. He is a very sweet kid.

That is all for right now. Gotta go break up the fight over a book. She likes to read, he likes to scoot it across the floor.....

Still forging ahead...

Mr. Gavin is good. He loves to run. We play at Brennon's school daily when we pick B up. He knows where to go and what to do! He navigates that playground like he built it himself! We've decided that Mechanical or Structural Engineering would be an appropriate job for him. :) He loves to build things.

Speech therapy is going well, we're going to start picking up the pace a little bit with that. The window of opportunity is now, with Gavin, and we want to pack as much as we can. He tends to lose words after a week or so. His bank of regularly used words is full at about 5-6 words. I think he knows 8-9 words, just doesn't use the other few that he has. We're working towards a bank of a dozen used words. The average 2 year old has a bank of 75-100 words. One would be amazed at how the *traditional* teaching of speech doesn't apply to Gavin. Having to worry about overstimulating him while teaching pretty much makes it crazy! From what I've been told, this is very typical of Autistic children. Gavin speaks to us in different ways. He uses his signs pretty regularly and his eye contact is great and once we learned to point, things became a little less frustrating for him. And that makes him easier to teach.

We've created a sensory diet for him. The diet is daily activities and routines that help him get from different portions of the day with less stress. It's quite a bit of work, but so far has been really really worth it. AND speaking of diets, we're learning more about the Gluten and Casein Free diet. We've talked to other parents that have seen great improvements in their autistic kids. Gluten is in EVERYTHING I've found, so we need to figure out how to go about all of it. People have found that a vegetarian diet is good also, unless we buy organic meats, which we do alot of the time anyhow, so we might transfer to allo organic meats, all the time. The hormones in meats these days are horrible. The kids get organic milk already as well. So- we'll see where the food diet gets us.

We're applying to schools next month the fall school year for him. The Joshua School and the Aspen Center for Autism are our first choices. Being how they are the only programs appropriate for him, we're hoping to get in! Tuition is about $57-65k per year for full time, and about 20% less for half time, which is going to be the likely choice for him unless we get some good scholorships. The schools will help us with financial aid, it's not like anyone has an extra $4-6k laying around, MONTHLY! I think that even with a perfect situation, most families can't afford that and the schools admit that. There are some state funded scholorships for children like Gavin. We'll apply for those as well as scholorships through the school and we're thinking of holding a fundraiser too, which we were told quite a few of the parents do for their kids. Aside from helpful, it sounds like fun! We can also volunteer at the school and help with events, ect. We're fortunate that we can take care of this for Gavin... Where there is a will, there is a way!!!

We've done some research and the people at the ARC have been so helpful. Nearly half of teens that were diagnosed less than 10 years ago are headed for full time residential facilities or need full time caretakers. Great advancements have been made in the last 10 years, but those numbers are expected to go down only by a bit. We beat the odds with Gavin's survival, and I don't want that to be our one free pass. They are finding that children that get very intensive therapy (like these programs and schools we're looking into) from ages 2-5 are doing really well. Over 80% of those kids are able to join their peers in mainstream schooling (not special ed) by 2nd and 3rd grade. After talking to an advocacy group, it's clear that if we wait to rely on the school district, he'll fall through the cracks. Before, kids were sent off to special schools, it's just been in the last 10 years that they've started incorporating the appropriate teachers and therapists in the schools for kids like this. SO, it's still work in progress, and not the ideal situation for our very special little man! Every parent just wants what is best for their child, and in this case, it's no different! Gavin just gets his college education at 2 AND 18!

That is how far we've got in the last few weeks. There is more out there, we're sure of it. :) There are some classes that we're going to take soon, and are hoping those will open up some doors for us as well!

 

Stanford, at 2

We've been researching these schools and programs for Gavin. It's amazing what they have to offer, and equally amazing what they charge.

We received the highest quote yet today. $1114 per week for a 5 day program ($57928 per year). $842 for a 3 day a week program ($43874 per year). Keep in mind, this is an amazing place!

I am aware that Stanford is not where Gavin is headed (yet), but when you are a parent of a 2 year old, and someone tells you the best place in the world for your child will cost between $43k and $57k per year, you hope that it resembles a *Baby Stanford*. Which, after some research, turns out Stanford is CHEAPER than these schools we're looking at for Gavin. This year tuition and fees is set at $31,200.

But we knew getting in to this, it wasn't going to be cheap. We don't do alot right now in life.

Our therapists remind us that there is a way for everything. And we agree. We'll make this work. Knowing that he'll be in school, at least 3-4 days a week, and we hope to enroll sis in The Goddard School that is being built next to our home.

In general, we're not scared yet. These numbers haven't thrown us off our track yet. We know that he's worth every penny, and we'll make it work for him with hard work and determination!

The Beginning...

I am basically doing a cut and paste of my initial email and then I'll go from there....

-As of today we're going ahead to evaluate Gavin for a autism diagnosis. Normally it takes 3-6 months. We've got our team pulling for us to ideally speed up that process.

We've been given the permission by everyone as of today to start learning, researching and looking at schools that are focused on kids with Autism. We're going to take the time during Kurt's leave from work to devour the system and all it has to offer. It gets a little crazy at times! Through Part C we have the resources of Respite Care for the twins. Respite care workers can come to our home and stay with the kids while we're out pounding the pavement looking at schools. We're starting with them next week. I think we're in a wonderful place right now for Gavin.

This diagnosis will open alot of doors of opportunity for Gavin. Everyone agrees that getting the diagnosis before he's turned over to the school district makes THE difference. Not A difference, but THE difference. So, we're looking to the positive side of that.

I am officially mad for once. We accept it. It won't ever change the way we love Gavin, look at Gavin or treat Gavin. But right now we're feeling like screaming and asking *Why Gavin????* It's not about us, his sister, brother, mom, dad, extended family.... Our job doesn't change. It might be a little more intensive, busy, overwhelming, but we signed up for that when we chose to have kids. Preemie or not. Sick or not. Able or not. But Gavin didn't ask for this. And doesn't deserve it. We look at him and see pure perfection. We see a kid wired differently, but we take that and turn it into seeing a kid with opportunity we didn't have ourselves and wouldn't have without him. Looking at the world differently then you were taught has really been a positive experience for us. With this we've met people we've never thought we would. We've found support in people we never thought we would. And because of that our world is richer, and a little more vibrant. It can't be all that bad right?

As I've said before, it's like planning for Italy and landing in Holland. I love that piece of writing. Holland is beautiful. Makes me wonder why I didn't think of going there. Still doesn't change that Kurt and I hoped for Italy. We didn't quite make it with Gavin. But as all the wonders of the world have more to offer than the human brain imagined, so does he. So much more than we ever thought we'd feel, learn and know. And, we've got Gavarooski to thank for that.

I'll update when I can and let everyone know of his progress. Some of you respond with such positive words and it means so much to us.

"The difference you make might be all the difference it will take"