day380

Hi there once again!I thought it was about time to update!
Since my last update alot has gone on.We had Easter at randys sister Shannons and Jenna actually got to play with all of her cousins!It was really nice.She had a great time and so did Mom and Dad.It was the first time we had gone to someones house and just sat back and relaxed in the sun and watched the kids play.Randys niece and nephew Tara and Tanner who are 10 and 7,spent Easter break at our house which was really great,Jenna got to do some major bonding with them and I think she would like to have kept them,she just loves to be around kids,she followed them around and tried to do everything they did and tried to repeat what they would say,it was so cute!
Jenna hit the 1 year mark from her transplant on the 11th of April as well.That was also a time for celebration.I made her a cake and we gave her presents and met with our family at the pizza parlor for a little celebration.This is a great hurdle she has passed and we couldn't be more proud of how well she has done!
We just returned from our 2 day stay in the city for Jennas 1 year post transplant check-ups.
We started out with developmental testing,she absolutely amazed all of us.They asked her to point to body parts on a picture and she knew all of them!They brought out puzzles and she put the easiest ones together right away,then they brought out the harder ones and she sat there and worked them until every piece was in place.She did activities for 4 year olds,that they said they didn't expect her to be able to do but she could.All in all they said that her attention span was great and her abitity to work things with her hands was great and everything we have been doing for her at home seemed to be working great!They said that the state regional center who is supposed to be starting to work with Jenna might give us a hard time because they don't think she is developmentally delayed, at all!Do I sound like I am bragging?Well you should have heard Randy then!We are very proud of how hard she tries to do all they put in front of her.They do however agree that her speech is delayed.She talks alot but she seems to have trouble articulating her words.This will require speech therapy which is supposed to be getting underway anyday now.
Next we went to the Cardiology dept. for an Echo of her heart.
She laid right down on the bed and they shut out the lights,turned on Barney and did the echo with no problems at all.This was a big change from last year when she screamed through the entire procedure.
Last year they said they thought she had a small hole between chambers,now they can't see any sign of trouble at all.They said her heart is beautiful.Shew!:)
Then we took Jenna to dinner at Harris Steak house.This was an interesting thing.We can't even get her to sit still for a happy meal.Harris is very fancy and quiet(usually;)So she made a huge mess,we had a great meal,we left and they probably got our names and told the hostess not to let those people back in;)
The next day we started with our normal BMT appt. and saw Dr.Horn,who said Jenna looks absoloutely beautiful.The whole appt. took around 15 minutes.They are so great I don't think we have ever had to wait very long for our apptointments.We are lucky.Then we had her audiology appt..They did quite a bit of testing and are still not quite sure if Jenna may or may not have a slight loss of hearing so they want to re-evaluate her in 3 months.They also want her to see the ENT before testing again to make sure her tubes are still functioning properly.
Then we went down and had a big blood draw for engraftment studies,enzyme levels and normal wbc's.It will take a while to get all of these back so i'll let you all know when we do!Then we were supposed to do pulmonary function testing but they cancelled us so we got to come home early.
We have seen Orthopedics since I last updated again as well.They did x-rays and compared them to the ones done at Shriners and said that they were very pleasantly surprised.Not only has her back not gotten worse,they think they see new bone growth generating between the vertebrae.This is awesome!!They are going to follow her closely still and put her in a soft back brace for 4 hours a day.
Monday she will go and be fit for her brace and have her second Physical Therapy appt.The first was last week and it went really well,so we'll keep going there and learning more things we can do for her at home,to help keep her joints from being stiff.
Okay I think thats all for now!I hope I didn't forget anything,it has been a busy couple of months!
Take care everyone!
Love,
Kristi,Randy,Lindsay and Miss Jenna