Join us in the adventures of our family, with our Belarussian Prince, Guatemalan Princessa and Ukrainian Princesses!

Thursday, September 29, 2011

Philly Trip!

I was up at 5:30 am, loaded the car and Gerri and headed off to the airport.
We checked in at 6:30 and then sat at our gate since our flight did not board till 8 am.
We boarded the flight at 8 am and at 8:30 when we were supposed to be taxi-ing the pilot came on the overhead to say that Philly had just closed the airport because of fog but he hoped we would be able to take off around oh 10:00!! So much for being really early for out 11:15 appt at Shriners!!
After last week not making it I was starting to think we were just not supposed to be going!!
I called home to let them know we were going to be late, then called Shriners to let them know we would be late.

napping on the plane :)
We did finally take off at 10:15, landing in Philly at 11:15. We got the rental car and then headed directly to Shriners. We ended up being an hour late but they were ok since we had called. When we got upstairs it was pretty quiet and we got called back at 12:45 because 2 other families were not there when their names were called :) They put a sticky note on our file to let them know we had a 6pm flight home and had to be out by 4!
One of the fellows gave Gerri a job of clicking the mouse every couple of minutes to keep the computer from going to sleep :)
 We ran up and grabbed lunch while we waited for Dr vB. By 2 I was getting worried we were not going to make our return flight home at 6. I knew we had to go to O&P and PT still :(

At 2:30 Dr vB came in and gave Gerri a huge hug! She gave him a card she had made him too. He was SO happy with her walking and her feet. We talked a bit about her hip surgery the end of November to get an idea of how much time she would be out of school. He thinks she will be in the hospital about 3 nights, then get discharged to me at the ronald mcdonald house.

If you are squeamish, skip this paragraph :
She will be having the head of her femur cut and repositioned (her surgery in UA put the head in the wrong position, 90 degrees and it should be 45 degrees) he will remove all the Ukrainian hardware and then he will cut her femur bone about half way down her thigh and insert 4 rods, 2 above the cut and 2 below. (this is her fixator) A week after surgery we will go back to see Dr vB who will show me how to manipulate the fixator. I will turn the screws to gain 1 mm of "space" every day. He thinks she needs to gain about 40mm to even out her leg length difference. She will gain a bit from having her hip fixed, but he also wants to overcorrect a bit too.  She has to heal a bit from her hip surgery before I can learn how to do the fixator so that is why we have to wait a week after surgery, then since he only has clinic on Monday and Friday we will have to hang around Philly till the Friday after, so we will be in Philly about 11 days total. Then we will have to fly back to Philly every week for follow up appts so they can check her hip healing and her fixator. Once we get the bone "space" he wants I will stop turning the screw and we wait while new bone fills in the "space". That could take anywhere from 4-6 months. When she gets out of surgery she will have to be in a wheelchair that allows her feet to be straight out in front of her while her hip heals.  The wheelchair we have does not allow that so she had to get measured for a rental one from Shriners. Dr vB says she can get up as soon as she is comfortable. Since we know she will not tell us when she is in pain, I am going to try to stay ahead of the pain as much as possible.  Since we will be in Philly for 11 days Ms V is going with us, it should help them both as they love to be together. Gerri is more worried about being in the hospital than anything else. She keeps remembering being in Kiev in the hospital by herself :(
The only think she asked was to make sure she was not going to be in a body cast again, like in Ukraine. Dr vB assured her she would not be in any kind of cast at all. So amazing!!
Since she needs to heal from the hip and fixator surgery the current plan is to not even think about her going back to school till after the first of the year. She will not be happy about it, but we have to protect her hip and femur. Gerri does not understand the fixator part or what it will do or look like. At this point we have not told her much since she is SO worried about the hip surgery part. She has seen kids with fixator's on but has not said much. When we go for our weekly visits during the "turning the screw" phase Shriners will also be shaving off the lift on her left shoe. That should help her see that her leg is getting longer :) I told her that when we are done with all this she will be able to wear any shoes just like any other kid!!
Dr vB says that by spring she will have a totally different gait. With her hip fixed and her legs the same length it will be amazing! He also said when he fixes the hip her knock knee will be much better too.

We left to head over to O&P (orthotics and prostetics) to have her AFO's adjusted to try to be able to wear her shoes again. Dr vB marked her splints and they trimmed them down in no time flat!!
We even had time to run up to PT to get measure for the wheelchair!

We were able to return the rental car early and get to the airport early!!
look at me in sneakers again!!!!!
We were actually able to get an earlier flight home, the last 2 seats!!
We did not tell anyone that we were coming home early and boy were they excited to see us and see Gerri with her sneakers on!! Victoria just about knocked Gerri off her feet!

Just the thought of what she will be going through breaks my heart! The pain, being uncomfortable, having to learn to walk again, it is SO much! I just SO hope this does not set her back too much. I think staying in Philly for the extra days will allow her to heal and relax, be entertained by Ms V. I hope to be able to really focus on keeping her pain under control too. Sometimes it seems like she has spent SO much of her 1 1/2 years with us having something done TO her. I am an adult, I understand the big picture, but she just doesn't :(
I actually brought out pictures from last summer which was before she had anything done to her feet so she could remember how she could not walk, could not stand, could not do SO much.
Pray for her heart :)

To top it off I am having my hip surgery in two weeks. I have to have a total hip replacement, I have put it off for years and just can't anymore. I told my Dr I had to have it done and over with so I could be with Gerri in Philly for her surgery. I told him if he could not do it in time for me to go to Philly then I would hold off till she was better since it is SOSOSOSO hard to get surgery scheduled with Dr vB. I am really worried that seeing me go through what I have to go through will scare the dickens out of her. I will be in the hospital for 4 long days, have to use a walker and graduate to a cane. Hopefully doing ok by the time we have to go to Philly. My Dr is pretty sure I will heal and then tell him I feel so much better I should have done this a long time ago! (I can't see it right now :) )
The kids are more worried about me being in the hospital for the 4 days, not because I will be in pain, but they are worried Daddy won't take good care of them!! :) :)

So lots of prayers for us here! It is a very very busy next couple of months!!

Sunday, September 25, 2011

We will try it again!

The chimney guys finally came back and fixed 2 of 3 flues!
The fireplace flue needs to be totally replaced, so we are just buying an insert!

Dan and Uncle cut down lots of trees!

eveyone pitched in

Gerri's self portrait!!
 This past week was open house at school, got to see Danny and Gerri's classrooms :)
Also had 2 hours of IEP meetings to get their FL IEP converted to MA. It is so amazing that they are willing to actually provide services informally without having an IEP in place and provide services that they have not had evaluations for yet, but they know they need it!! both teachers had great things to say about each one. Danny is shy and his teacher is helping him meet some new kids. Gerri definately is NOT shy, matter of fact she talks to everyone!!
Turns out they have recess at the same time and they were playing together instead of other kids.
I sat with both kids after the meeting and we talked about them both having a goal of playing with 1 new kid each week, including learning their names!! Gerri and I also talked about what a stranger is, not talking to everyone she sees and trying to focus and not interrupt. It is going to be very hard for both of them.  Both played with new kids on Thursday and happily told me their names :)
Waiting for the bus on Friday! Danny played hooky and went sailing :)
This is our neighbors dog, loving the attention!

Uncle has been VERY busy around our house! This little pool house turned into a big problem.
The right side had lots of carpenter ants and the left side had termites!! And birds nests and lots of dead birds :(

Uncle took away LOTS of wood

The new flue caps, the middle one is the chimney waiting on the new fireplace insert.

Today was football day, Grampy played with the girls

then it was swimming time!!!!!
Victoria is pushing Grampy in!

Maggie SO wanted to join them!! but 70 degrees was too cold for her :)

Tonight was my nephew's 16th birthday!!

yes!! 16!!

The kids making their own pizzas!!
Katie and Dan helped make them beautiful!

So proud of her pizza!!
And if you look very closely - you will see a gap in her smile!!
Victoria lost her first tooth today!!!!!!!!!!!!!!

And the title is explained by Gerri and I taking a PLANE to Philly tomorrow for her follow up and preop appts. We are taking it easy tomorrow :) :)

Thursday, September 22, 2011

Hard to believe it!!

22 years today!!
love you honey!!!
(yes, I was a child bride!)

Monday, September 19, 2011

the best laid plans :(

I had a hard time sleeping because I was afraid I would oversleep and not hear my cell phone ring.
At 3:00 am I was loading my car and wrapping Gerri in her blanket and sneaking out the front door.
I didn't take any coffee so I wouldn't have to stop :)
40 minutes into our 5 hour drive to Philly I heard a funny noise and lights started lighting up on my dashboard :( I pulled over, dug out a flashlight and had to walk around to see what was going on.
A flat tire! at 3:45 am!!
Luckily I have AAA (thanks dad!!)
Turns out that they had to call the MA state police since I was on a toll road.
An hour later!! a tow truck goes flying by so fast he could not stop and back up to get me so I had to wait till he went up to the next exit to turn around come back the other direction and then turn around to get back to me!! So at 4:45 am I finally saw this through my front windshield

He loaded us into his cab and then loaded my car onto the flatbed

Gerri was SO excited!! (me not so much!!)
 We had to get towed to Honday since I have special run flat tires (which did work :) )
He dropped us off at 5:00 am and we had to wait till 7:00 am till they opened up so I could get help.
Gerri and I spent the 2 hours sleeping in the car in front of the dealership :)
Poor tire!!
I called my dad around 6:15 since I knew he was awake and on his way to work :)
He swung by at 7:15 to pick us up and get me coffee!! :) :) I then drove him back to work and then drove home with Gerri. We managed to pull into our street 10 minutes before Gerri's bus arrived!
The kids were SO excited to see us :)
Gerri told them that we had gone to Philly but had to come home cause of a flat. I told her we never made it out of MA and she said of course we did, we got up very early and drove a long time! :)

Luckily the dealership called to say it was just a nail in the tire and they were able to plug it!! :)
So needless to say we were both very tired today!
She was sound asleep as soon as her head hit the pillow and I am heading there now!
We will head back to Philly next Monday, but we will fly :)

Sunday, September 18, 2011

Lots of work, demo and diggin goin on!

We had some masons over to do some chimney work

They were supposed to be here 1 day, I left and they were busy

I came back to this, and we haven't seen them since!
Turns out all 3 flues are damaged and we are trying to decide what to do :(

Grampy playing with some new leg weights :)
 My sister is having an addition done on her house so the kids and I went over on Saturday to watch some demo and some digging!!

they found this big rock - doesn't look big does it!?!?

how about now?? that is Danny standing there.

We then headed over to my other sisters to "help" uncle empty their pool!
It was a very big production 

water fight!!

They were ALL SOAKED! But they emptied the pool one cup at a time :)
 Today we went back to check the progress at my other sister's :)
BIG hole!

Little hole in their dining room :( with daylight showing

the girls loved to watcht the machines!

Nana was trying to find the ferret graveyard to move it, but no luck :(

Gotta play on the big rocks and the dirt!

It took all day and 2 trucks to get the big rock out of the way

has enough of the machines, let's play with leaves

one of the crew standing in the big hole, on the big rock trying to jiggle it into place

Tomorrow am, very early, Gerri and I head out to Philly for her followup and preop appts. It will be about a 5 hour drive each way :( My sister was nice enough to lend me an audiobook for the trip.
We also get to hug and love on Ms Carolyn and Madeline!! :)

Wednesday, September 14, 2011

Farmers Market and a FIRST!!

To celebrate a great first week at school Danny went off for the weekend with Grampy and Grammy to Cuttyhunk :)
He has become quite proficient as a dinghy driver!!

He and Grampy did lots of walking!

Just hanging around! :)
(he talked and talked about this toilet)
 On Sunday while the boys were busy, the girls went to So Boston and a really cool farmers market!
LOTS of food and things to buy and sample!

grilled cheese food truck was packed!!

people selling everything!

vintage jewelry

taking a break to eat hot dogs and fries :)

shopping is SO tiring!!

Ms V started PreSchool on Monday and was not wanting to go at all! she wanted to stay home with us. But once there she had a ball. She is one of the oldest in the class and the teacher has her help. Now she is loving it and can't wait to go!! She goes every morning for 3 hours and it is at the high school :) I forgot to take a pictiure on Monday but it was the same first day outfit from Danny and Gerri's first day at school last week.
 But the coolest thing of all is that I got a call from the school nurse yesterday and she said she had received a fax from Dr vB (from Philly) and he cleared Gerri as having NO physical limitations!!! So that meant this morning FOR THE FIRST TIME Gerri and Danny rode the regular bus together!!!!
Victoria was sad to see them go, but next year they will ALL ride together!!!
Danny was SO excited to show Gerri the ropes on HIS bus :) He forgot to help her up the stairs but kept a seat for her next to him :) On the way home Gerri told Danny she wanted to ride with Ella who is in her class :) But he DID remember to help her up and down the stairs. (and she only needs help to get up and down quickly since the steps are so big and I don't want her putting her hands on the steps)
SO SO cool!! So proud of them!