another day in Cincy

Sorry for no update yesterday but the wi-fi was out at the hotel.  All has been going great, we have run into some long ago friends and caught up on some lost time.  Yessterday we started the day off at the eye doctor who has decided that her perscription for her glasses has changed mildy but not enough to warrant an immediate change in her glasses.  He thought the cornea and nerve endings looked very good.  This has been the first time she allowed them to check the pressure and of course it was good.  He did write out a new script in case she broke her glasses for us to change them but otherwise it can wait til next year.  Dr Kimball was joyous as ever and pleased with her tests from the day before.  The PDA is still there but no leaking or issues worth doing anything to it.  The mytral valve is still trickleing but another one of those things that is not worth fooling with for now.  There is slight thickening in the wall of one valve but all is working beautifully and he wants to see her and reevaluate it all again next year.  Dr Davies and her staff was so excited to see us and pleased with Kendra and all that she has accomplished this last year.  Stella loved to hear her talk.  She is amazed that Kendra hasnt lost some of her hair but says it myst be here to stay.  We did all of the usual labs and it will be next week before we get the results but I will keep you up on those.  Today we met with genetics ( I am not sure why), but all they wanted to do was look and play with her for two hours lol.  They girls are resting this evening we have done alot of running now the past three days and we are just gonna kick back.  Tomorrow should be an easy day pre-op evaluation for hernia repair.  Have a good evening and God bless.

Yearly check ups

Our trip to Cincinnati yeseterday went great.  But I do have an unusal event to report.  We left home at 12:30pm and arrived her at 6:15pm.  We only stopped one time for lunch and potty break, and everyone did great with their movies........the strange thing is that NO ONE took a nap the entire way.lol  that is just so odd.  We are now staying in Florence and I really like the neighborhood. Today has been a very good day considering we should have been at the dr offices all day but ended up getting done about 1:00.  So here is what little I know so far:  First thing this morning at 8:15 we had to be at the Anderson Campus to see Dr Tamai for our yearly hip and knee consult.  We had xrays and reviewed the past years events.  The doctor is amazed that Kendra has the basic hurler's hips and knees but are not quite what he is used to seeing.  He has NEVER seen a hurles kiddo that has the range in her hips that she has or that can actually sit indian style with no restrictions.  The plan is to do surgery in January in two stages.  We will do the right side of her hips and right knee first and then a few weeks later do the left.   The left side appears to be the most affected although he tells me that this is a much smaller degree augmentation than they have seen in these kids.  We then had to go to the main campus for ECHO and EKG where Kendra tolerated them both very well.  We will see Dr Car tomorrow for these results.  Our last appointment today was scheduled for 3:00pm but we were able to be seen by 1:00( whew).  We visited with Dr Cornwall and reviewed the results of the carpal tunnel and trigger release susrgery that we had six weeks ago.  He was very pleased, although it was not a home run but now she is in the ball game.  The change in range and her dexteraty has been remarkable.  We knew that there would not be 100% reversal of the damage but the goal was to give her better usage and comfort.  As of right now she is doing things she couldnt do before and as he told me today we are still early out there is alot of healing left to do.  That made me feel I made the right decision and went ahead with the surgery that we were unsure of.  God has been good to us and has guided the doctors hands and encouraged their knowledge with helping Kendra.  What more could I ask for???????  I will update again tomorrow, Kiristen brought a whole weeks full of homework and we just ordered pizza ( their favorite is Domino's).  Kiristen has been such a help and a great big sister, I am so proud of her.  Good night and will write more tomorrow.  God Bless

I know it has been forever and I just keep putting it off but here is a quick update on us.  In April we found out that Kendras engraftment had finally turned around  she went up 7 percent to 42 little boy.  We are praying this will continue and of course Stella was well pleased.  Her GAG levels continue to improve as expected.  We have had a rough summer so far.  We were in the middle of the storm that hit West Virginia June 29 2012.  We had very little structure damage just the privacy fence, but we did without power for 6 days and lost all of our four freezers of food.  Kendra is in Extended Summer School for special education as she is still unable to write and the school feels this will benefit her with entering Kindergarten next year.  We are now working with Dr Cornwall (ortho) for her hands.  She is locked and unable to do alot of fine motor activities like writing etc.  We went today for her pre-op physical and her last vaccination for school and all went well.  Her surgery is next Tuesday at 6:00am, and I will take my computer and update that night.  They are going to do carpel tunnel on both hands and trigger release on her left hand only as they feel her right hand is to far gone to work on.  I intend to try and convince them to try at least.  Here is a few new photos, she looks and is doing GREAT!

Long Overdue

Sorry it has taken me so long to update, but everything has been pretty crazy lately.  Work is triple time, and have a couple new large projects at home, and of course the two little ones keep me very busy.  Enough excuses lets get to the important stuff.

We arrived Sunday at our ususal Extended stay and ran into a mountain of issues which pushed us elsewhere but could only stay one night.  There is a race here this week and there is not alot of options.  So on day two we moved again to Creek Rd. (which I highly recommend to our cchmc families  the place was nice comfortable and very reasonable).  When they decided to add an appointment for Friday that hotel was as well full so we moved again........to a dump   we were there all of 5 minutes til I was on the phone moving again, and calling guest services for assistance again.  They were able to help us find a place in Florence (great place and reasonable and CLEAN)  anyone needing info let me know and I will send it toyou.  Unfortunately not one time was we offered the Ronald McDonald house again!  On neither of the four other hotels comparing to the price we had been paying at our normal hotel, I really pushed the issue that it was out of our range but there was no offer  again!!  Oh well on to the big stuff.

                                          
Xray 1 is from March 2011, before surgery.  Xray 2 is from Tuesday.  You can see the improvement as her corrections is now 0.  Dr Jaine and Dr Crawford are extremely please with her recovery and has started weining her from her brace.  We will not see them again for 9 months, but before we come back in October for her yearly checkup they have me on a schedule to have her brace off all the time.  She has become alittle to accustomed to it and seems to like it more that I like but it is her security.  I am still waiting on the decision about school and her assistance needs. 

                                   

Both of these hip xrays are from this visit (you can see the hardware in her back, oh and you gotta love the technicians comments on the second one  lol).  The first one was taken with her brace on so dont be alarmed at the extra loops and rivets you see in the front lower quadrants.  It took three of us to hold her for these and difficult was not the words to discribe her emotions.......Kiristen thought we were killing her.  I requested this visit as she had been expressing increased pain in her hips and knees since her surgery.  I wasnt sure if it was due to a change in her structural balance or something more complex.  Dr Tamai assures me that all is the same but he does intend to proceed very soon, the goal was age 4 for working on her hips and knees.  So just as I thought we were going to go home early due to an appointment cancelling on Thursday I was notified that Dr Jaine had approved a sedated MRI for
Friday at 2:00.  This was needed from both sides of ortho before our return in October.  We will then make a decision about repairing her hips and knees.  We have also been referred to add Dr Cornwell to Kendras team beginning in October as he is the specialists for hurler hands. 

Here is a few additional pics that I hope you will enjoy.  We have tried to do alittle site seeing and relax alittle while we are here.  The last time Kendra was too little to enjoy the zoo, edens park, aquarium, plus a couple more.  I dont know about them but they have wore me out.  But Ive enjoyed every minute watching them learn and love together.....  Enjoy as I have done...........................

                                                

These are from July 4, and the Botanical Gardens in Cincinnati.  Kiristen picked out these as they are her favorites..

 

 

      

Thanks again for checking in and sending love and prayers. 

Good Night :)

Now this one takes the cake

Long Overdue

Sorry I am alittle behind, but Miss Kendra is a 24-7 hands on right now.  We came home on Easter Sunday, she is improving beautifully.  I have been able to reduce her pain meds to three times a day and the valum only at bed time, just so she will relax.  She is VERY mobile and headstrong.  She started getting brave on Tuesday night doing things on her own!  She is cooperateing very well with her sponge baths at night and allowing me to take off and put back on her brace..  Her and Kiristen had a mini-egg hunt and she had a ball!  She looks great and is eating great.  The only thing right now is she is very demanding and whiney which I am told that it is pretty much par for the course.  Here is a few more pics I hope you enjoy.  Thanks and huggs and kisses from us..................

Back to Extended Stay

Sorry that I did not get to update yesterday, but we waited from 1200pm til after 500pm while the coordinator searched for a pediatric wheel-chair.  Needless to say we have not found one in Cincinnati that can be serviced in West Virginia. The Hospital loaned us one to use here until we go home and then we will have to do something different there for trips to the store or prolonged times when she will need to walk.  But we are back at the Hotel and Kendra is progressing very well.  Her trust level has increased and she will slowly walk small disstances by holding only your hands.  She is getting more comfortable and not needing as frequent pain medication, from every two hours alternating the valume and oxy. we have moved to 3 hours.  She is still quite comfortable and not sleeping as much.  We did go out and stroll around the parking lot for alittle more than an hour (she wanted to see her ducks), just for a change of scenery.  She loved it and did not want to come back in.  Hopefully the wind will die down and not get colder and we will try to go to the park later today after she has napped.  Her appeatite is increasing and has ate better today than since Tuesday, Kiristen has been a very big help and is over anxious wanting to walk with Kendra.  They are playing together and trying to get alittle rowdy at times.  Here is a couple more pics I thought you would like.  Kendra looks great and the swelling from laying on her belly during surgery and all of the IV fluids has subsided.  Will add more later.........Thanks again and huggs and kisses

This is her new Monkey....and her new brace.

Apologies for the hair, but it was the last of our worries.

This tinkerbell blanket has become a comfort thing, it is very hot but she wont let it out of her sight.  Smiling for the camera, telling me "I'm a princess, Mommys baby, and I love you...:)

Day 2 post-op

Kendra has had a pretty rough night.  I will try to remember everything.  She sat up on the side of the bed once, and walked with 90-95% assistance to the bathroom but needed carried back.  I was hitting her pump in advance but seemed not to offer alot of relief.  She does not like the idea of having a diaper on and wants her panties (one of the first things she asked for when she woke up). But they removed her cath.  As of midnight she had not urinated and they did a straight cath which she hated, but it relieved her.  They are saying her kidneys are working fine it is just from the pain medication and anisthesia that her bladder is not releaseing as it should.  Her bowels are working fine with no issues.  They have put her on medication to help with this but we are still waiting.  About 930am they decided to insert a regular cath again and she peed everywhere!  But til now there has been no more so its just a waiting game as to what they will do there.She has been up walking to the bathroom today with the same assistance as last night but not as much crying from her while doing it or sitting on the potty or toilet.   All of her iv fluids are removed but we still have the ivport for her antibiotic.  It is a large one in her right hand and is only functioning for intake and will not draw so we had to draw labs manually.  We casted her for her brace and I had big discussion with them about how the last one disabled her.  They have assured me that this one will be different, lighter and easier on her.  Kendra had to go down to xray so Kiristen got to pick out the design of purple butterflies for her (they only had pink in camo...).  We are still waiting on PT as the order somehow got misplaced..........  We allowed her to get a good nap with the way her night and morning went and then we are putting her in a chair and takeing her out of the room for a stroll.  I will take pics and post them tomorrow.  Dr Jayne was in and was very pleased with her progress, and feels we will see more mobility and cooperation from her tonight and tomorrow.  She is still trying to be little "jaws", but if it were me in that kinda pain I probably would be too!!  Hopefully the internet will be working in the room tonight and I will add more.  Thanks again and huggs and kisses from Kendra