Avery’s Journey

Well we got our bathroom done!  A friend of mine actually read my last blog and e-mailed me.  Turns out her husband owns his own handy man company.  He does almost everything under the sun so if you need some work done call Shane Towery at 936-524-0543.  He does great work!!

Avery’s an official pre-k’er now : )  We had our last meeting with the school last month to make it official.  He’ll start school August 25th and he’ll go from 7:45-10:45 every day.  I can’t wait!  I was dreading this day worried about how my baby would be treated at school.  After meeting a lot of the staff though I’m gaining some confidence in them.  They have a lot planned for Avery and I’m excited to see him blossom.

We’re working on changing his therapy.  Right now I’m driving him 40+ miles round trip just for one hour of occupational therapy.  The place he goes to doesn’t have any openings for physical or speech therapy right now and with gas at almost $4 a gallon I can’t keep driving that far just for one hour of services.  Texas Children’s has a satellite office run out of St. Luke’s at 242 so we went there to see about getting services from them.  Avery had an occupational therapy evaluation last week and a physical therapy evaluation yesterday.  The occupational therapist didn’t mention where Avery is (I think last time he was evaluated he was at the 6-12 mth age level) but as far as physical therapy the lady said Avery’s at the 4-6 mth age level.  I was really sad to hear that.  Even though he can’t crawl or walk I thought he would have been higher….I was hoping so anyway.

Now that Avery’s turning 3 he’s officially graduated from the Early Childhood Intervention program.  We have one more visit with his dietician next week and then he’ll be done.  We weren’t getting any services from them besides the dietician (and that was only once a quarter) so it won’t be a big change.  The ladies at Texas Children’s said they would refer us to a nutritionist there once we started our therapy with them.

We’ve recently changed Avery’s seizure meds.  He would go to sleep at 8 or 9 pm at night and sleep sometimes until 1 or 2 pm the next day.  That’s not counting the 2-3 hr nap he would take between 2 when he woke up and 8 when it was time to go back to bed.  We have been trying to get his neurologist to change his meds assuming that had to be what was causing him to be so tired all the time.  The neurologist wouldn’t do it so we basically went and found someone who would.  The new neurologist we took Avery to agreed that the old seizure meds were quite out dated and there were much better options for Avery.  He said normally you only put kids on the old seizure meds when they are in the hospital and can be monitored closely.  Those meds also cause kids to be a little “slow” and being that Avery already has some mental retardation we don’t need meds that make it even harder for him.  The new meds have been working great though!  Avery’s up later at night (bedtime now isn’t until about 11) and he up earlier in the morning (about 7 am) but he’s not sleeping the whole day away.  He has to go have an EEG next week to check the dosage of his new meds and make sure they’re working properly.

Other than that I’m just looking forward to enjoying the summer with the kids.  Look for some new pictures soon in the photo gallery.

Happy Father’s Day to all the dads : )

Jeremy and I need to have some work done in our bathroom.  We’re hoping to find someone we know or who is a friend of a friend.  We can’t really chance having someone do crappy work or take our money and do no work at all.  So if you know anyone you could recommend we would love for you to contact us.  We need our tub and tub wall replaced and most likely the sheetrock and some rotted wood replaced too.  Our shower head doesn’t have any water pressure at all so we can’t use it.  We need that replaced along with the tub faucet.  We can buy all of the supplies we just need someone to do the installation and repairs.  If you know anyone who can help please e-mail me at brandy@averysjourney.org

Now on to Avery news.  We saw a new neurologist two weeks ago.  We went trying to get Avery’s seizure meds changed.  We really don’t like the meds he’s been on since birth as they have some side effects that aren’t good for Avery.  Our original neurologist wouldn’t change the meds so we decided to get a second opinion.  The doctor we saw the other day agreed that Avery’s current meds were a little out dated and there were a lot better options for us.  We got the meds changed and so far so good.  The doctor did say he wasn’t sure about the dosage until we could get in to have some testing done.  He put Avery on 1 ml of Keppra for now but said if it’s not enough Avery could have a seizure so we need to watch him very carefully over the next few months for signs of seizure activity.

We now have Avery back in therapy twice a week.  We go to occupational therapy every Wednesday and Thursday.  The place we go doesn’t have any openings right now for physical and speech therapy so we’re on a waiting list.  The neurologist we saw two weeks ago said that Texas Children’s Hospital actually has a satellite therpay center in The Woodlands and wrote us orders to go there for an evaluation.  We’re pretty excited about that!  Everyone knows TCH has the best staff and the drive will be so much closer for me.  We drive from Conroe to Porter right now for therapy.

I’m still going through the process to get Avery registered for school next year.  We have a meeting on the 21st with some staff members at the elementary school.  We’ll see the special ed teacher, some of the therapists, the nurse and a few other people.  They will basically evaluate Avery to see what his needs are and then develop a plan and some goals for what we want Avery to achieve next year.

With the new medicaid Avery got approved for we get home health care.  They will send an aide to the house up to 30 hrs a week to take care of Avery while I clean, run errands, or do whatever I need to do around here.  I’m excited about that but nervous to have a stranger here.  We have a meeting with the aide Friday at noon to come and check the place out, meet Avery, and for us to get to know her.

Well I guess that’s about it for now.  I hope everyone has a great weekend and Happy Mother’s Day to all you mommas out there!

I received an e-mail today from the president of our CFC support group.  There has been a petition started to ask congress to allow a tax break for the many expenses parents with special needs children are forced to pay.  We pay over $400 a month for family medical coverage through Jeremy’s employer and yet every time we need something for Avery they try to find a way not to pay for it.  I have pasted the petition below along with the link to sign it.  It only takes a few seconds and could make a world of difference.

To: U. S. Congress, U. S. Senate, All State Congressmen, Senators, and Governors

We, the Undersigned, are parents, guardians, friends or family members of special needs children. Every year during tax preparation time, we find that there are no tax breaks for the inordinate amount of money we spend on our children’s needs. Parents of healthy children get tax breaks for college tuition, yet no one is required to attend. The parents of special needs children, who may or may not ever be able to attend college, do not get tax breaks at all.

Parents pay thousands of dollars yearly in educational and therapeutic bills which the school districts and/or insurance do not pick up. NCLB and IDEA may try to force the districts to provide a Free and Appropriate Public Education for our children, but the districts are understaffed and underfunded. They find ways around them or try to fool uneducated, unsuspecting parents so that the districts don’t have to spend money. Rural and poorer school districts just don’t have the tax base to support these programs in addition to NCLB’s unfunded mandate.

Even if the districts can afford them, many schools will not use programs or therapies they do not consider educationally “proven”. Yet many of these programs, such as ABA and Fast ForWord, have had much success outside of the educational world. There is a great deal of misinformation about many of these programs. That many of this country’s educators and doctors are uneducated about programs and therapies for educating children with a disorder as epidemic as autism is unconscionable, yet it is reality.

Because of these factors, parents are literally on their own, and spend exorbitant amounts of money on these programs and therapies in order that their children can attempt to live in society one day. Many of these programs are cost-prohibitive and most are not considered to be medical expenses. Having a tax break will also give money back to the parents, which they can then spend in the economy.

We believe there should be both Federal and State tax breaks for parents who pay these extra costs. We are not paying for these programs and therapies because we enjoy it – our children need them, and we are trying to make sure that our children reach their full potential. Not being able to live productive lives only ends up costing all taxpayers more in the long run, especially when our children have to live off the government. The investment now will reap rewards later in many ways.

With this petition, we ask our Senators and Representatives to sponsor a bill allowing parents and guardians of special needs children to deduct their educational and therapeutic costs from their State and Federal income tax returns.

Sincerely,

The Undersigned

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here is the link to sign the petition

http://www.petitiononline.com/txbrk456/petition-sign.html?

Hey everyone!  I know it’s been forever since I’ve blogged but there really hasn’t been much going on lately.  Avery has seen his dietician since the last blog and I’m happy to report that he’s gained 2 lbs since eating more solids.  Now I know it’s only 2 lbs but that’s huge for Avery.

We’re still in the process of getting him enrolled for school next year.  We have a meeting on the 22nd for the district to have him assessed and determine what kind of goals we want to set for Avery.  I also have to get all of his medical records together and as much info on CFC as I can to give them.  I want to make sure his teachers are as educated on his condition as I am.

We finally get to start therapy again next week.  The therapy place we

go to only has openings for occupational therapy right now though.

We have to wait for an opening to come up before he can get physical and speech therapy too.  We had a slot for physical therapy before but lost it since it took so long to get the medicaid back from Jeremy’s last raise at work.  We also get home health care now and can have a nurse come out and give me a break during the day.  Avery doesn’t require a lot of medical care during the day but after 3 yrs of mommy being by his side he won’t let me leave the room without crying.  That’s definitely going to be a problem for his teacher next year.

We added the photo album to the home page so check it out if you haven’t already.  I’ll try to keep it updated with plenty of pictures of Avery!  I’m trying to get Jeremy to add a feature where you can register your e-mail address and it will automatically notify you when I post a new blog.  That way I don’t have to keep sending the e-mails out myself.

I have a friend who is riding in the upcoming BP MS150.  He’s looking for donations so if you have a little to spare please consider donating.  All donations are tax deductible.  Here’s the link for donations:

http://www.ms150.org/ms150/donate/donate.cfm?id=216667

For anyone interested my e-mail address has changed.  The new address is brandy@averysjourney.org

Please update your address book : )

Have a great weekend!!

We recently changed our site host from Yahoo to Dreamhost and when we did that we lost a lot of stuff.  Unfortunately one of the things we lost was the blog.  As far as we know all parts of the new site are up and running but if you find a hiccup somewhere please let us know.

 As far as Avery goes he’s doing great right now : )  The biggest improvement we’ve seen here in the last month is his eating.  Avery’s up to eating about 2 yogurt cups a day and will even sign to “eat” when he gets hungry!  I haven’t seen any weight gain come from eating solids yet but hopefully we’ll see some soon.  We went to a meeting today with CISD to start the transition process to get Avery enrolled in school.  Since he has a disability he gets to start pre-school at 3 instead of 4.  There’s a special PPCD (Parents of Preschool Children with Disabilities) class and this year there are only 4 kids and 3 teachers so each kid gets a lot of 1 on 1 attention.  As much as I dislike the school he’ll be going to I’m excited for him to start.  He’s capable of so much and I know he’s going to improve greatly when he starts school. 

 The new host allows us to put up a photo album so look for pictures to come soon!  Hope everyone has a great weekend : )