Here we go again...new set of casts...those darn cute little feet keep slipping out!!

Update from Erik and Dawn:

"Well, we made it 4 days with these casts, but even these started slipping again.  Analise has been screaming in pain the last couple of nights, and partly during the day.  No sleep for any of us.  We didn't know if it was because of teething or her casts.  We couldn't just pick up and fly to Philadelphia again, so we made an appointment with Dr. Hurley at the Kaiser Fontana this morning.  She agreed that her left foot was slipping, so we decided to change both casts again.  It actually went very smoothly.  Dr. Hurley gave her new casts, fiberglass only, to keep them lighter.  

Bye, bye pink casts, hello white, so we will have to put leg warmers on to dress them up.  Poor Analise had little sores on both of her feet from where her feet were slipping and rubbing on the plaster/fiberglass.  

On the way home, Analise finally slept, almost 3 hours without any fussing!!!  Hopefully these casts will last the 2 and a half weeks until our return visit to Philadelphia to remove the casts and get new custom braces for her legs.  

On a positive note, Analise is doing a little talking now.  She says "mama" on a regular basis, and every once in a while she throws in "papapapapa" and "hi."  Very cute.  Kaley caught her on video saying mama.  

Analise's teeth look like they are starting to come in on top.  Hopefully her screaming is not related to teething or we are in for some sleepless nights!!

Thanks for all of your support for Analise.  We hope everyone had a great Easter!

Here are a couple of pictures from Philly and today." 

Here is Dr. Zlotolow-the orthopedic upper extremity specialist in Philly and...

Dr. van Bosse the orthopedic lower extremity specialist.

Here I am having lots of fun with Mommy and Daddy...HEY!!! Nobody told me I was having surgery the next day!?!?

Here is my second set of cute pink casts...

here is my third set of casts...now white, but I can dress them up with my cute leg warmers ;-)...

and here I am, finally able to sleep now that my casts don't hurt...I'm pooped!!! ;-)

Analise had to get new casts today...

Update from Erik and Dawn:
"Well, we thought we would have a relaxing day, but actually spent it at the clinic at Shriners Hospital.  Analise's feet seemed to be receding in both of her casts.  We were worried that the casts would eventually fall off so we emailed Dr. van Bosse and he told us to come on in.  They had to take xrays to see if the the feet were coming up.  Her leg bones looked great, but she definitely needed new casts.
After several hours, we went through the process of taking the old casts off and putting new ones on, NOT FUN!  Analise did not like it, and actually thought for a moment she wasn't going to have casts anymore.  We were actually very lucky, because he had his clinic open today and her ankles were getting very irritated from the pressure.  The new casts are much tighter, but we need to be extra careful to not pull or grab on them when changing her diapers or picking her up.  Very difficult.

We are happy we are coming home tomorrow.  We took a couple of pictures while the casts were off.


Look how straight her legs are, YEAH!! Hopefully she will be running around soon!!"

Here is Analise...sleeping with all her new hardware...so glad she can sleep through it and will never remember any of this!!!

Analise doing great after surgery!!

From Erik and Dawn:
"Analise has done great since her surgery!!  We actually got to leave the hospital early yesterday because she was doing so well.  We have only needed to give her Tylenol twice since the surgery and she slept great last night.

We are still getting used to the casts again.  It is very difficult to change her diaper because the casts are straight so if you lift her legs by the casts, they could possibly pull right off because her feet are so small.  We are glad it's only a month this time!!

I felt all of your prayers and so did my Mommy and Daddy!!

We also went back to Shriners today to get her elbow braces adjusted to fit better.

Since the Ronald McDonald houses were full, we have been staying at the Wyndham in Mt. Laurel, New Jersey.  It is very nice and even included breakfast every morning for the $50 a night price (special rate for overflow RMDH's).

We are leaving on Saturday night on a direct flight from Philly to L.A.  Virgin just started this service to Philly and it was awesome on the way out so we will probably be using them for our trips.

Thank you for all of your support and prayers for Analise.  She seems to be back to her normal self.  She is even kicking her legs everywhere with those big casts (they seem to always find our knees or faces). 

We love you!

I will try to send some pics or videos soon."

Analise's surgery went very well!!!

Right before surgery in my hospital gown

Night before surgery, up since midnight...what is happening tomorrow?!?!

After surgery...just a little bit groggy but I finally get so see Mommy and Daddy!!
Love my new pink casts!!

I'm happy now...finally was able to eat!!

Just received a call from Erik and Dawn.  Surgery was at 8am Philly time and it was quick.  The phone call was also quick because they were able to go in to see Analise, so I am sure more details will follow, but here is a quick summary:

• They didn't have to shave our Sweet Analise's beautiful blonde hair and were able to put the IV in the chest.  
• Surgery went very well and Dr. van Bosse does not anticipate any more surgeries on Analise's legs.  (Praise God!!!)  He mentioned that there is a possibility of the need for hip surgery, but we will have to wait and see and even if it was necessary, it would be a few years away.
• The tendons were very tight, with one side tighter than the other.  
• Analise was casted and they also positioned her feet so that the Achilles' tendons are stretched
•  On another subject, they will need to make some adjustments to her new arm braces before she comes home.

We are sure Erik and Dawn are loving up our Sweet Analise at this very moment!!  Thank you all for your continued prayers and support for Analise, Erik, and Dawn.   God heard our prayers!!!

Analise charms Philly...surgery on for early Wednesday morning...pray, pray, pray!!!

From Erik and Dawn:
"After a little bit of traffic, we arrived at Shriners Hospital in Philadelphia this morning.  First we met with Dr. Zlotolow, the upper extremities specialist (pictures to follow soon).  He examined her arms and said her shoulders were in great position and not internally rotated like some of the other AMCers.  He said she had very strong triceps.  This actually can hinder movement because they are so strong, so he recommended wearing arm splints at night which will keep her elbows bent at 90° and keep her triceps "relaxed."  The splints were made onsite, so we will give them a try tonight, yeah:(  Her wrists are still stiff and we need to continue to stretch them.  He liked how fat her thumbs were and said that that shows promise, possible movement in the future.  He also mentioned that movement can happen anytime within a couple of years.  He even shared a story of a Ukraine boy who had minimal movement after five years, but after being adopted and getting proper treatment in the United States, began moving his fingers and arms more than in his first five years of life.  Again, he reiterated that we just don't know what the future will hold.  He said to keep up the therapies, both through CCS (California Children's Services) and at home because they have been working well.  So, we will continue and wait....

Dr. van Bosse (lower extremities specialist) examined her next.  He said her Achilles were still a little tight and her knees were difficult to bend due to tight quads (lots of stretching needed).  He said her "prior club" feet looked good.  He believed she was still in need of the surgery on her tight lateral hamstring tendons.  On Wednesday a small incision will be made on the back of each of her knees to "snip" the tendons and allow the lower part of her legs to be turned inward to help straighten her legs.  This, in turn, will help her legs support her weight in the future when she is able to walk.  Otherwise, it would be difficult for her to walk with her current "knee-knockers."  After the surgery he will cast her, while pushing her feet up to stretch her tight Achilles tendons.  Four weeks later, we will return and she will have a special brace made to help keep her legs in a straight position.  It shouldn't be too long of a procedure early Wednesday morning and then off to a recovery room, all within the same Shriners building.  

So overall a good trip!  Everyone was in love with Analise.  "She's so cute!" was her name today.  She was in great spirits with Dr. Z, but when she met with Dr. van Bosse, not so much.  It had been a couple of hours, she was hungry and tired, and not liking the stretches he was doing.  Pictures will come soon to show her faces.  

Thanks for following Analise's journey with Amyoplasia.  She sends lots of wet kisses."

We're off to Philly for surgery for Analise!!

On our way!!!

Our happy, Sweet Analise!!

From Erik and Dawn:
"Well, we are off!  Our second trip to Philadelphia to meet with the "experts" in AMC (arthrogryposis multiplex congenita) at Shriners Hospital.

We are actually flying into New York, then driving to Jersey, where we will be staying because it was significantly less expensive than round trip tickets to Philly, and every $$ counts!! 

As of right now, there are no rooms in either of the local Ronald McDonald houses, so we are staying in a hotel in New Jersey (about 15-20 minutes from the Philly Shriners) that gives discounts to Ronald McDonald/Shriners families when the houses are full.  We are still hoping to stay in one of the houses so we are able to  meet some of the AMC families that are staying there right now.  Hopefully something will open up!!  

We have an appointment Monday morning to finalize everything for the hamstring surgery with Dr. van Bosse, the lower extremity orthopedic specialist.  Analise will also be evaluated by the upper extremity orthopedic specialist, Dr. Zlotolow, to assess the the development of her hands/arms and make recommendations on treatment.

Analise is scheduled for surgery on her hamstrings on Wednesday, April 4.  She will have to stay overnight in the hospital after surgery, and since only one of us is allowed to stay with her,  that privilege goes to her Mommy!!❤

We will return to California on Saturday night, and if everything happens according to plans, Analise will be wearing full leg casts again.

Packing for a week trip with a baby is not easy, we are bringing everything!!  Then we have to do it all again in about a month to take off the casts from the surgery.

We will try to keep everyone updated this week, so stay tuned."

From Grandpa and Abuelita:
"We are so blessed Erik and Dawn have found Dr. van Bosse, Dr. Zlotolow, and Shriners Hospital in Philadelphia!!!  We continue to pray that Analise does not need this surgery and that her legs are developing normally, but should she need surgery, we know she is in good hands and God's hands!!  We will keep you all informed of the actual time of the surgery so that you can all focus your prayers for our Sweet Analise and to give Erik and Dawn the wisdom and strength to support Analise in the best possible way, and of course, we will also keep you updated during her recovery.  Analise has been such a brave and happy little trooper during all of her challenges in her young life and is loved so much❤❤!!

PS: just got a message from Erik and Dawn that they just arrived in New York safely and are headed to Jersey... about 2 hour drive!!"

 

Analise loves jumping on her bouncer to the The Theme from the Lone Ranger

(Grandpa Richard actually remembers the Lone Ranger TV show...anyone else?!?!)

 

Analise has started sitting herself up straight on the high chair, 

sometimes making it challenging to feed her. ;-)

She also HATES to have her arms on the tray/table and always manages to pull both arms off as soon as she can using her back/shoulders/chest muscles.  

We give thanks and rejoice in every small milestone!!

 

Here's my favorite Dolly, whose name is... Dolly ;-)

Yumm...prunes?!?!

Can't wait to see that smile again!!

Checking in with Analise

 From Erik and Dawn:
Where does the time go?  Analise is almost 7 months old and now weighs over 15 pounds!!  Tonight we were looking at pictures of Analise of when we came home from the hospital 6 months ago and we were blown away with how small she was.  Newborn diapers were too big on her and now she is almost into the size 3's.  Slow down Analise!! 

I love sitting up...but...

HELP!!! I'm falling...

...and I can't get up...YET!!!

Hey...where are the matching shoes!!

Analise is eating stage 2 foods now and drinking 4 ounces of pre-digested formula during the day and 5 ounces a couple times during the night.  She still throws up when she sits up from the pressure on her stomach.  We can't wait until that's over.  And she's not sleeping through the night yet, but hopefully that's just because she's been sick.

Analise loves to eat, but gets upset if you don't feed her fast enough!!  ;-)

Analise has been sick the last couple of weeks and that's not fun for her, or her parents.  She first had the croup cough for about a week and then after she lost that, she got the cold/flu thing that her mommy and siblings have had for the last 2 weeks, and an ear infection.  Hopefully soon we can have a sick-free home, and maybe a little more sleep. 

Even though she was sick, she still had a big smile!!

Surgery is still a go in about a month in Philly, (April 4th) and we are getting a little more nervous with each passing day.  We keep hoping Dr. van Bosse examines her and decides she doesn't need the surgery, but whatever is best for Analise and her future.

 Analise loves to "sing"... and "dance"!!  ;-)

Dawn had her birthday on February 1.  She's now ??.  She also had the week off last week and got to spend every minute with Analise.  She loved it and kept wondering how she could make it happen for the long-term.  Lottery?  I even saw a few lottery tickets around the house.  She's trying!!!



Kaley, Kyle, and Kassandra are busy with school and sports.  Kaley still isn't big on this driving thing, and we're o.k. with that.  Kyle is playing lacrosse and getting pretty good at it, he even made the all-star team.  Kassandra is playing on a AYSO flex tournament team, and although they're not winning, they're getting better.

As for me, with all of the above, life is just busy.  A few weeks off at Spring Break will be much needed by all of us.


Thanks for your continued questions, comments, and concerns about Analise and our family.  They are greatly appreciated!!