Afghanistan, take 3

We are awaiting confirmation about whether Dave will head to Afghanistan in July. The good news is that it is only a month. The bad news is that it is Afghanistan and he'll likely miss Ben starting school and Liam's birthday for a 2nd year in a row. Still, it could be worse.

Holiday Ball

I don't get to dress up often, and by not often, I mean that I have not worn a non-maternity semi-formal or formal dress since 2006.

Last night was the Holiday Ball for Dave's school, and I got to wear a cocktail dress.  With babysitters hard to find (or being told afterwards that they have never sat any kids with as much energy as mine), I had a friend watch the boys.

Some photo proof that I can wear make-up, although not apply it, the make-up was courtesy of a free make-over:

Me and my hubby:

At the ball:

Not sure where to go from here

I have lived here before, so I thought I knew the landscape, but things change in 2 years.

I knew that by placing Liam at a private school, we'd lose his IEP.  I battled with anxiety over that for months.  He has started school (will be a seperate post) and I now am confident that was the best choice.  I am still on the fence about initiating a transfer of Ben's IEP as I expect he will lose it after they re-evaluate him, especially since his only diagnosis is vague.

I did not expect getting private services to be so difficult.  We planned to use Liam's BCBA we used in 2010.  She is not responding to my attempts at contact and when I called Liam's ECHO case manager, she could not find her name.  I got a list of other BCBAs, but it doesn't look hopeful for ABA to work out.  I can get services from 4-6pm or I can drive to Auburn.  Honestly, I am not sure how I feel about either choice.  I can be judgemental and have high expectations and the services offered here in Montgomery did not meet my expectations.  Auburn seems promising but that is a way to drive with two small kids....and the place would be starting therapy at 3pm.  I actually planned to phase out ABA next year as I am not sure it fits Liam's needs anymore.  I am okay with giving it up this year, but I want to make sure he doesn't regress.

Speech services are non-existent here.  The base doctors are referring to only one place and they have a 1 year wait list.  We leave in a year.  I called the place where Liam did private speech last year.  They have a waiting list but it was small and I was really impressed with their new director of services.  I called Tricare to change Liam's referral but was told that center is considered "out of network."  I remember it was when I lived here last, but the Tricare person changed it for me.  This time the Tricare person was quite snotty and said she didn't care if the place he was referred had a 1 year wait list.  I would need to take Liam back to his PCM and the PCM would have to write a justifcation which the snotty Tricare lady said could then be denied.

I cannot have Liam have no IEP, no speech, and no ABA.

I am having trouble figuring out where to go from here though.

He will start hippotherapy in September and he is on a waiting list for OT.  I have looked into social skills groups and the nearest one is Birmingham and would cost $40 a session out of pocket.

Did I mention that I am having trouble functioning due to nearly crippling depression and anxiety and utter hatred of the heat?  No one from base will call me back and there are NO appointments for me to be seen.

The adventures of a 4300 mile move

Life has been a bit crazy since I last blogged.  After blogging that Ben was also sick, his fever went up to 105.5 while on antibiotics and fever reducers.  We spent the next two days battling his fever to keep it in the 101-103 range.

We got him better in time for the cats health certificate to fly.  The vet noted that Sammy was "obese but otherwise healthy" (snicker).  With Murray, she guessed that he was losing his vision, has a heart mummur, and his liver values were off.  Murray is very special to me, so this was quite upsetting.  We saw the vet we love here in Montgomery and she confirmed that Murray only sees shadows and is almost blind.  She said the other two things are non-issues at this time.  I made Murray ;promise he'd live forever.  He seems happy enough and has adjusted well with all the changes in the move, so it seems it isn't impacting his life much.

After all that was the actual flight.  I expected for us to get kicked off the plane, so really I guess it went better than expected.  We took from Anchorage at 9pm on July 16th and landed in Minneapolis at 5:40am on July 17th.  On the plane, Ben kept saying he was scared and started shaking during take-off.  Liam and I sang to him and distracted him and he relaxed once we were in the air.  I gave both boys melatonin, and the night went like this:
-Ben falls asleep in carseat, Liam awake for 45 minutes (and two extra doses on melatonin)
-Liam falls asleep across my lap (Dave was across aisle and missed all this fun)
-5 minutes later, Ben starts crying and comes out of his carseat so now BOTH boys are on my lap
-20 minutes later, they both start crying and Liam goes in carseat
-15 minutes later, Liam starts crying and comes back on my lap.
-10 minutes later they both are crying and Ben goes in carseat
-10 minutes later both in my lap

It repeated every 5 to 10 minutes, switching from carseat to lap.  At one point out of exhausted desperation, I woke Dave who had slept through 4 hours of this, but that only resulted in Dave, me, Liam, and Ben smooshed into 2 airline seats.

Did I mention that they cried every 10 minutes?

We land in Minneopolis and are hurring to find are connection which was due to leave in 10 minutes when Liam barfed all over himself and the floor in the middle of a crowded terminal.  The good news is that our 2nd flight was delayed.  Flight to Atlanta was uneventful.  While at baggage claim, Ben was so exhausted he passed out in his stroller and napped 4 hours through the transfer into the car, drive to the hotel, and being carried into the hotel.  Liam, was awake until Tuesday night,,,,which meant he was awake for about 40-48 hours straight.....he even managed to swim for 3 hours in the hotel pool and never exhibited a single sign of sleepiness.

Let me interject here to declare: "I HATE YOU PARENTS OF GOOD TRAVELERS." and I believe there is a special spot in hell for people who declare confidently that it is the parents that make children good travelers.

We arrived in Alabama on July 18th, and soon found out that the moving company SCREWED up.  There were supposed tocall us when our stuff reached Alabama, but they "forgot."  They were supposed to call a 2nd time before putting our stuff in a storage unit, but they "forgot" to do that too.  As a result, we didn't get our stuff until July 28th.  I am sitting in a house, surrounded by boxes.

We cannot get referrals for therapy which means we cannot get on any waiting lists.  Dave is considered to be "on leave" which is funny as this hasn't felt like a vacation.  Until he is allowed to in-process to base (which he cannot do yet), we cannot get in to see a PCM.  Our Alaska doctors are not allowed to refer the boys for therapy here in Alabama and we only have access to urgent care.

The extra fun part is that we get to do this move again next year.

Updates about various appointments

We had 3 appointments on Monday; that is our slow day. :-/

First, Liam had his Monday morning ABA.  I talked a bit with his therapist as I am feeling overwhelmed by his anxiety/OCD type behavior involving hoarding.  He had gathered up all Ben's birthday gift bags, all the Easter baskets in the house, every empty plastic egg, all the toys the Easter bunny brought (including Ben's toys), an empty candy box, some of Ben's birthday presents and had ALL of this stuff into his closet.  With his table full of Lego creations and his dresser cluttered with school art projects, it is impossible to walk through his room without bumping into some weird thing he has decided to hoard.  Dave thought of a brillant idea for the plastic eggs; we mailed those back to the Easter Bunny.  Now we have to work on getting the rest of the stuff out of his room.

Second, Dave came home to stay with Liam who had to skip preschool to go to the dentist with Dave.  In order to get medical clearance to move (which we need dur to being in the exceptional family member program), Liam needs dental clearance.  The Air Force is weird.  So Dave took Liam to the dentist while I took Ben to his 3 year well baby visit.

Ben is HUGE!  Well, for him anyway....no wonder my back has been hurting.  As usual his head measured 95th percentile (52 cenimeters).  He is 37 inches tall, which is 65th percentile and the first time he has been above average!  He is 32 pounds, which is 60th percentile!!!!!!!!!!!!!!!  To put it in perspective, both his height and his weight were below 20th percentile at his two year well baby.  He has grown nearly 4 inches and gained 7 pounds in one year!!!!!!!!!!!!!!

Now, the not good stuff......He flipped out about the med tech taking his vital signs.  The med tech got frustrated with Ben and kept saying how he'd never seen a kid be so difficult about his temperature being taken on his forehead.  I wanted to yell at him that restraining my 3 year old is no picnic for me.  Then we saw his pediatrician.  You'll rarely hear me say this about military doctors, but I REALLY LIKE this guy.  He is good and he is awesome about talking to the children and asking their permission before touching them.  It did not much matter; Ben was okay with most of the exam, but flipped out about the doctor looking in his ears and checking in his diaper region.  The pediatrician said he sees a lot of red flags for autism in Ben and on his developmental screening paperwork.  Of course, this is not news to me, but Ben is so inconcsistent that I don't often hear it.  He recommends we get a 2nd opinion from a different developmental pediatrician. 

Third, Liam saw the dentist for dental clearance.  Dave took him as the boys appointments were too close in time for me to do both.  Liam had x-rays of his teeth and cooperated for a cleaning.  Dave said he did amazing.  He was excited to see his bones with the x-ray and sat still and followed all directions during the teeth cleaning.

Finally, we got word about a summer program that Liam's school SLP had suggested.  The University of Alaska-Anchorage is offering a speech and language clinic with students studying to be SLPs.  It is an hour twice a week.  Liam was accepted to do it.  It runs from the beginning of June until mid-July so it fits perfectly in our schedule regarding the move.  I asked the program director if I could apply for Ben and she said the wait list is short.  The application needs to be filled out by a SLP so I will have her do it when I take Ben to his school based speech therapy this morning.  Cross your fingers that Ben gets a slot as I think it would be quite helpful for him.

That is it for our Monday updates......off today for one preschool, two speech therapy appointments, two OT appointments, and Ben's special ed play group.

Running away to Australia

This is what weekends look like around these parts; don't judge me for the wine.

This week Liam proposed that I run away to Australia with him.  He actually said "Mommy, can you and go far away?  Somewhere Daddy isn't?"  I asked if he meant he wanted to go away with Mommy but without Daddy.  Liam said "Yes, we can go to Australia."  I asked about Ben and he said "Baby Ben can come, but not Daddy."

I hate it when my kid proves Freud right and my graduate training wrong.

It looks like Liam and I won't be leaving for Australia anytime soon.  However, the military will be moving us again.....this time back to Alabama.  I will get to see again the wonderful friends I made when we were there before and Dave will get to attend ACSC in residence, which is a huge honor.

Turned down AGAIN for allergy testing...

But came away with an unexpected referral...

I honestly don't remember how often I asked for allergy testing for Ben; I probably should have kept track.  I took Ben in today for a visit with his PCM to discuss the negative endoscopy results and decide how to proceed with weaning him off Prilosec since his GI is in Seattle.  In the end, there were a few other items I wanted to discuss.

My big guy weighed in at 25 pounds and measured 33 and 1/2 inches.  That makes him in the 16th percentile for weight and the 30th percentile for length, which is awesome considering he was only 18 pounds and 29 inches at one year.

(notice skinny boy's ribs?).

I told his doctor that the GI wants him to wean off Prilosec but when we tried it this summer, it was disastrous and that I am not comfortable doing it with his specialist so far away without some sort of plan in place.  She said there is a local GI and offered a referral there.  GREAT....that would have saved the Air Force alot of money if we had gone there initially.  She isn't comfortable discussing how to wean him off Prilosec and suggested we discuss that and any on-going reflux symptoms with the new GI.

I asked for allergy testing.....again.  My reasoning is that if 90% of babies outgrow reflux at 1 year old and Ben STILL has it at 2 years old, wouldn't a simple allergy test make sense to figure out why (as he has already been testing for everything ranging from cystic fibrosis to eosinophilic disorders).   She denied my request saying that if his endoscopy was clear and eosinophilic disorder is not play, there is no reason to test for allergies. SIGH.....

We talked about Ben's involvement in Early Intervention.  His PCM called his name, and there was not only no response, but he didn't even flinch.  I called his name to show he does the same ignoring for me.  I described his sensory issues.  I said that he is very social, but isn't interested in peers.  She recommended a referral to a developmental pediatrician (this is the type of specialist that diagnoses autism spectrum disorders).  I have a roller coaster of emotions about this, but the short answer is that I *know* it is the right thing for him to see a specialist.  My gut tells me that Ben is different than Liam, but my gut also tells me something is going on.  The waiting list is 6 to 12 months, so hopefully by the time we are seen, Ben will be answering to his name and will be making friends.

So, the way forward....Out of pocket testing for gluten and dairy intolerance, waiting list for developmental pediatrician, staying on the Prilosec until we can consult with the new GI, and having a local GI doctor.....and going back in 4-6 weeks for his 2 year well baby visit.

The cost of therapy

It has been a long, trying week and I want to complain and whine (trust me, I really do).  This evening I got my our insurance statements which shows the cost of Liam's speech therapy, occupational therapy, and Ben's occupational therapy.

In January, Tricare paid $2024.48 in occupational and speech therapy for both boys.  Of that, I had zero co-pay.  In addition to that, Liam received ABA therapy.  We can claim up to $36,000 a year for ABA.  This means that my boys can get $60,000 of therapy.  Our co-pay for the ABA is $50 a month.  I know many people don't have this benefit  and know how incredibly lucky we are.  There is a cost for it--frequent travel, moving every 2 years, threat of deployment, and the stress of the military lifestyle of the type of child that needs routine...and the fact we have to start all over with searching for therapists and waiting lists when we move. ....

But still, after a rough week, I feel like I need to acknowledge exactly how lucky I am. 

TDY mantra

No vomiting
No ER-worthy injuries
Minimal meltdowns

* and repeat* *and repeat* *and repeat*

Please make the above be true.  Saying good-bye tonight was hard; the deployment was too recent for me to want a 3 week break.