Thursday, April 15, 2010

My day spent with Annabel...









Oh how I have forgotten what it is like to just be with Annabel. Today Annabel missed school so we could go to an appointment for a communication device. It was at 10:30 this morning so I knew we could just relax in the morning with no rush schedules. It was so nice. Kourtni (our nanny) has gone home for about ten days for her brothers wedding. I tend to run too many errands or let her do much of the care when she is here. But today it was just Annabel and myself. The reality is that I do need help and Kourtni is very sweet and Annabel really responds to her. But how I have forgotten how it is to be just with Annabel. She is such joy! She wakes with such happiness and she absolutely loves her bath. What I got to experience today was how social Annabel is. Everywhere we went, in waiting rooms, restaurants, therapy she brings out happiness in all she meets. The pictures above is us just playing prior to her appointment at speech. The four pictures below are speech therapy with the rep who came to show/evaluate Annabel for her new device. Annabel has really begun to look at object (real) and picture objects and choose with fairly good accuracy. The device was unbelievable and I am praying that she will be eligible for it. Of course, I will have to learn much about it to make it as useful and it can be. It will sing songs, play games and help her learn and communicate. The last two pictures are of Annabel and myself going to eat with Ms. Edie. Edie ask us to go to lunch many times but with Annabel going to school, being sick, or drs. appt. in Houston it is very hard to do. So today we did just that! We then returned home to just be again!!! Ok, I know that very soon I will be moaning about not having help, or that I am tired but for now it is Annabel and me. Of course, thanks to everyone in the family who is here to be with Annabel also. Sorry for so many photos above but I could just pick a few. Can you tell I just love this precious face?? Thank you, Jesus!
P.S. Ok,I spared you the pictures but today prior to cathing her since we are having such a laid back day, I placed her on the potty and she tee-teed right away, looked up at me and began clapping. Her body maybe small, she may not talk or walk, but let me tell you she has got a mind. All I know is that I need to do so much more with her. Thanks to all, as always for reading and following her story.
Therapy
Therapy
Therapy
More therapy
Lunch with Ms. Edie...
Or maybe lots of playing with Ms. Edie...not sure Ms. Edie care too much about eating!

Wednesday, April 14, 2010

Good things...


I just read my post from last night and I felt it seemed negative. Sorry! Really things are going ok here. I don't want to seem ungrateful for anything. In everyone's life things will be up and down, good or bad, highs and lows, so this is just part of life.


What I failed to mention was that while at the urologist yesterday I met a very sweet young momma. Her name is Jasmin and her little girl is Sophia. She lives there in Houston and had recognized Annabel from reading her blog. Her little girl has a form of T18 (mosaic) and will be 5 years old in May. We are going to get our little girls together and we can't wait. She was so full of helpful information, concerning programs, medicines, hair products (her daughter has very curly hair). I found myself wishing I could have waited longer in the waiting room just so I could continue talking with her. Also, I forgot to take a photo of her holding Annabel. So, good came out of this visit. Thank you Jasmin for recognizing us and saying something.


Also this weekend I will be traveling to Houston to meet another family who will be in Houston while her husband does some work. Her little girl is Christina, T18 and she is 3 years old. Hopefully we will have dinner on Sunday evening and then spend a little time Monday before I travel back home. I probably sounds so crazy, but it is such a blessing being in the presence of a child who shouldn't even be living, if you believe in the stats. Of course, this brings back memories of my trip to Houston to meet another family. The Botts, who have since lost their little girl. To Brenda and Jerry, I think of Brianna so much. She made a huge impact on our life and don't think I will ever forget this little girl.


So all in all, good things are going on. I have always wanted to reach out and be reached out to with Annabel's blog. Medically it is so important to have a source to share with other families. Emotionally, it is also very important. Thank you to everyone who share in Annabel's journey!

Tuesday, April 13, 2010

The ups and the downs...

My husband's brother passed away suddenly last week...

The joys of seeing love....



Breaking a mother's heart when it is so very hard to go back...

Holding on til the last minute...


Two princesses...

One tough little girl...


Loving her Bubba...

These last few weeks have had their ups and downs. As the first photo shows we laid to rest Mel's brother, my brother-in-law very suddenly. But we know he is in a better place and not suffering any longer.

I seem to miss Tyler more knowing it was so hard for him to return. He knew what he was going back to and I guess that was reality over fantasy. I have been so blessed to talk with him via Skype and it makes all the difference to see their face and their emotions. He looks well and I am just praying and wishing him home.

The twins will be representing our home town in the local Festival. It is many events over a two week period. This was at a tea honoring them by our local Bar Association. As the festival comes to an end I will probably be sharing more pictures.

We spent a quiet Easter at my parents home for lunch. It was relaxing and quiet. My brother and his family wasn't able to attend so they were surely missed.

Wedding plans are still taking place for Derek and Linzy. The wedding will be held here at our home on Aug.6th.

I continue to be grateful for my children coming by and taking time with Annabel. She thrives off their interaction and can be very tired and they pop in and she comes alive. It is shear joy to see her hear them coming in and wait til they enter the room and she makes eye contact. She glows with joy.

Annabel continues to suffer with her UTI's. She will be having another small surgery for a dilation. Dr. J says he will do this and do this really big(ouch). He will also look around to make sure there hasn't been any trauma that could have caused a fistula (maybe from cathing) and also make sure she has no more reflux back up to her kidney. She has ran a low grade fever for most of the last three weeks. But it doesn't keep her down. She seems uncomfortable at night mainly. Even though the surgery in Jan. has allowed her to urinate on her own she still has such poor flow. This enable the bacteria to not be flushed out as is the norm. There is definite mention of a vesicostomy if this doesn't do the trick. I am not going there now and have total faith in Dr. J's plan of action.

I pray all of you are doing well and will have a wonderful springtime. Blessing to all of your families.