Avery had his tonsils out Friday and boy was it painful but he is sucha trooper.  He is on round the clock narcotics and actually requires more than we use for his rodding surgery.   This has not decreased his walking ability though but has actually improved it.  Maybe it is the lack of inhibition due to him being high on tussionex but he is walking from room to room without as much instability(or fear it seems).  Whatever we are just happy to see it.

 

 

Alexi will have her tonsils out on the coming Friday.  Pray for mommy..........

Avery got his PAM last Wednesday and on Thursday he took independent steps for the first time.   He can take up to 10 steps at a time and is standing independently for up to 30 seconds.  He is so excited and his family is off the wall.

Doing well at school but we are still not welcome.  His PT and speech therapists are very good and willing to communicate.  No word from OT and this is allowed by the school system.  

 

Oh well you got to take the good with the bad.

 

Mary

Avery stood independently(not holding anything) for 5 seconds x 4 in the rain.  He is letting go a little more each day and building his confidence.    Just want to keep a date thing going so I can go back and record it in his baby book.  

 

Things have calmed down in school and hopefully communcation will continue to improve for his sake and my sanity. 

 

Avery is now working on potty training and is doing great with the stools but although he can hold his urine for 3-4 hours he still doesn't want to pee in the potty freely.

 

 

Well I am sure that you all are getting sick of hearing about Avery but I have to post his progress because it is just so phenomenal.  After me telling people over and over and over last year just how smart and much my boy could be if they would just let him ...........well he is doing it now because he has got the right team.   His new teachers and assistant and therapist are just awesome and they are actually coming to me with suggestions instead of me going to them and push push push..    Avery was put in big boy pants today (3rd day of school) and he only had 2 accidents and went 4 times in the toilet.  All on his 1st day.  I just am soooo happy.  He is practically running in his walker.......well actually he is at times running in his walker.  He walked up stairs (upright ) tonight with his brother and he has started to become more vocal YEAH.  

 

Alexi has been down for last 3 days.......1st strep and then she started complaining of her tooth hurting which actually is her jaw and so I believe she has a jaw fracture.  Only thing we can do is pain meds and soft diet.  

 

Alec is loving middle school and on his 6th day at school he has already read the required amount of points for this 9 week block.

Aidan and Aubrey just had their PTA Open House and we got to see all the work they are doing.  They are doing really well and Aidan has come up to an A student.  Aubrey is writing at a very high level and her teacher would like to submit her work.  She has learned multiplication by osmosis (Aidan is learning the times tables) and she knows the 1's 2's 5's 10's and 11's if you can believe it.

 

Well we are going to visit Charleston this weekend and explore Fort Moultrie and Boone  Hall Plantations as well as the river side areas and hopefully some little shops too.  Lucie will go with us.

Avery is walking up a storm with his posterior walker. He is 5 weeks postop from the tibia rodding and he is almost back to his baseline and buzzing past it.  He can go everywhere with the walker and is probably doing 300-500 ft at a time.  When we go out he uses his walker from the car to the restaurant or store to get into the cart.  No carrying this big boy.  He can ride his trike for an hour straight and seems motivated to move now.  In this last week we have been visiting his new classroom(which he will share with Alexi) and doing his therapies there and he has  just been amazing in his development and blossoming.    He is achieving goals before they can be written and in the last few days he has said more than 10 new words or word approximations.   Yesterday he said Alec, Aidan and Aubee as well as I eat and up.  He has also done bus and bock(for block) and his absolute favorite is apen(for open) which he does to see the sunroof open in the car............hey whatever motivates him.   His new PT gets IT.  His new Teacher gets IT.  I look forward to a really great year.

Well we left for Omaha Friday night and stopped in St Louis where we
spent 2 hours at the zoo. It was 100 degrees and so we moved over to
the Science Museum which was just awesome. We checked into our
Hotel at 3 pm and napped for 3 hours and then relaxed by the pool and
had Mc D's which made the kids happy. My kids went crazy because the
Hotel had a stream going through it and a lake stocked with Catfish
that were so fat and overfed that they could catch them by hand. On
Sunday Morning we went downtown and visited the Arch. It is fun
city. We arrived in Omaha at 7 pm and enjoyed a couple days with
the Hoppes, Grys and Sanders at the comfort inn. Avery was able to
swim the whole time with his new Xerosox to cover his splint. On
Monday we enjoyed 5 hours at the Omaha Zoo with Ronit and Adam.
This was good because I was on major anxiety mode by this time. Oh
yeah we celebarated his 4th birthday on Monday before his surgery.

Tuesday was the surgery and we had a new Anesthesiologist but she was
great and listened to everything I had to say. Avery got great
preop meds and I walked him to the OR doors. They got me back as
soon as they got him in the recovery room and he woke up because I
was talking to him. The surgery took a little over 2 hours which
was long for a tibial F-D but Dr E says he wanted to be really
careful with his bone (after the first rodding caused an explosion
due to his bone quality). He was in a short leg cast that was
bivalved and I asked if he would be nonweightbearing for 2 weeks and
he said weightbearing as tolerated, the rod was stable and if he
crunched it down a bit all the better.

We always start off on a PCA of Morphine with bolus built in if
needed and then he gets Torodal and Valium every 6 hours. Except
for 2 45 minute sections in 44 hours he was otherwise comfortable.
You can't ask for more than that. I wanted him out and so on
Thursday morning(after playing drill sergant all night to keep the
nurses from waking him) he was washed and dressed and in his
wheelchair waiting for his doctor at 730 am. The resident asked if I
was ready to go and that Dr E had a case at 8am and would not be able
to see us if we left before his case was done. Too bad ---so sad
but gotta go. Anyhow Dr E showed up 2 minutes later and gave his
blessing and I followed the nurses out to their station so they could
dc the IV and we were out the door by 8:05. The Nurse who walked
us to the front said she had never seen a child leave the hospital
that early..............obviously she was not familiar with this
particular Mama Lion.


Avery did AWESOME. The distraction of the Conference and his
family just brought out the best in him. He had energy to spare.
Usually this would be when he decompensates in the hospital so I
think we will always ask to leave at day 2. No naps---up until 10
pm every night and dancing all night Sat!. People were disbelieving
when I would say he had surgery Tuesday.

Thursday morning at the Hilton he was flying up and down the hallways
in his chair like he has been using it for years(he used it for 2
weeks in September). At 2 pm I wanted to take a nap and so I put
him in the portacrib and got ready to lay down. He stood up and kept
standing. I was shocked and so what does any good mother do? I
took a video to prove that I did not make him do this. I then went
back to the lounge to alert other Mama Lions to my dilema and that I
was going to nap. Back to room and he is cruising the crib.
Weightbearing as tolerated probably did not mean less than 48 hours
Right? Well after 5 minutes of standing I gave up on napping and
took him down to the pool and he went swimming and smiled and
laughed. What a wacky time.

He was like this rest of the conference and I cannot get over how
well he travelled.

We also stayed on the top floor and with 8 people it was so worth the
extra $25 a night. Breakfast was nice and all the free drinks you
could want. Hot snacks in the afternoon and cake and cookies in the
evening. It was so nice seeing all our OI family and meeting new
members as well. It was soooo crazy with the surgery and just the
conference in general that I didn't get to send the time and
conversations that I wanted with many of my friends. It was hard to
recooperate from 48 hours without sleep as well. I did the Medical
CME on Friday and will try to summarize what I heard there as well a
little later. The dance on Saturday was just so much fun and our
OI Parents girls on the stage were so fun to see. We missed the
Talent show but will have it official or unofficial come Washington
DC. There is a lot of talent in all these kids. The fracture count
(casualty rate) was much lower for this conference. I simply cannot
wait to get together in 2 years and I know that my kids cannot wait
as well.

It will definately be a shorter drive for us. It took us 21 hours to
drive straight through from Omaha to Pinehurst and Avery travelled
without incident(If you don't count a couple accidents in his pants--
LOL)

Alexi refused to ask Dr Esposito if she could have inline skates.
She told me he was "Freaking her out" and that she would wait until
she was 5.

Anyway I so enjoyed the comraderie and conversations with old and new
OI family. I was so glad that Alexi and Avery's PT could come and
meet so many wonderful OI folks. I only wish there was more time and
in our case less stress from the surgery but I am glad that he is a
complete man of steel in his lower extremities. Please try to start
saving right now for 2008 because the socialization alone is worth
the trip and the close communication with many wonderful OI
specialists is just icing on the cake.


Mary

PS Avery is cruising along furniture and doing sit to stands for the
fun of it today. Tomorrow will be 1 week! Yeah F-D rods!

Well it is with sad heart that I acknowledge my littlest broke his tibia on Thursday the 7th of July.  It is a bad one and he initialy had a lot of pain but by Fri Mom had him splinted better and the pain meds were working and by Sunday he was trying to stand on it and actually was scooting around.  The plan is to have rods placed in it on July 18th (hopefully) while we are in Omaha for the OI conference.   He is such a trooper and this will actually allow his weaker right leg to strengthen for the upcoming walking we know that he is capable of.  Just last week he was practically running in his posterior walker and getting stronger day by day.   It will just be a short set back and then we are off to the races again.  He has a huge rooting team behind him.  Thanks to all my OI family and friends.

Today Avery rode his trike from Our Garage to the neighbors garage which is greater than 1000 feet on even and uneven surfaces and then he rode it down a dirt path to get to their trampoline.  (You have to use what motivates them RIGHT?).   He also walked 25 feet with his posterior walker with good posterior and steering with on a theraband to keep him from getting to his butt.  Yeah this is great because he is just 7 weeks out from a femur fracture that caused him a lot of difficulty.

 

2 days ago Alexi taught herself how to swim independently and now she really needs to be watched.  Doesn't want to wear her vest anymore.  She is jumping off the board and diving from the side.  All the kids get out of school this week and while some parents dread Summer Break we like it because we do  not have to rush around to schools everyday. 

We plan to swim and make trips to the libraries, parks, children and science musuems.  We will enjoy a week at the beach in June and a week in Omaha in July for the OI conference. 

 

Alec will be acknowledged this week for having the most AR(accelerated Reader) points ever obtained at his Elementary School and he could have actually have had double this if he had tried (1100).  He has read the Tolkien and Harry Potter Series 3 times.

Aubrey is into golf with Dad and Aidan is busy with friends and swimming.  Alexi and Avery will go to the same school in the Fall and will continue with their horseback riding.

I am attempting to start a blog for family and friends to stay in touch.