Team Angelina Golf Tournament

Okay so we have our www.TeamAngelina.org website live and are actively promoting the Golf Tournament scheduled for January 28, 2009! I am really excited about the buzz it is causing and the items donated already! We have even received cash donations to be entered into the drawings for dinner at home for 4, house cleaning and golf lessons. Those were really unexpected and made my heart smile that even in our economic recession people really do care about helping our little girl be the best Angelina she can be!

We are putting all the proceeds to use to pay for additional physical therapy, speech therapy and occupational therapy. Angelina is also going to receive Hyperbaric Oxygen Therapy as well. That won't happen for a couple of months because Angelina has 2 impending surgeries in her future. Her optometrist has recommended we do the surgery to straighten up her right eye so she doesn't lose sight completely in it. Also, her GI doc says if she continues to vomit as frequently as she does we will be looking at doing a fundoplacation surgery to minimize or eliminate the vomiting so she doesn't have further damage and erosion to her esophagus.

She is doing so well in physical therapy though. The last week she has really tolerated being on her belly without having a complete fit. She tries to get to toys that are on the floor, pushing and pulling with all her might. I swear one of these days I will remember to video it so you can watch it here. I have such pregnancy brain going on right now! I am literally the chicken with it's head cut off lately! Anyway, today she played with a new toy while on her belly then I helped her get to a crawl position and she stayed that way for a little while on her own. Once she got tired with that we pushed up to sitting on her knees and she played with a toy on my lap mostly balancing herself. I was so proud of her. Even Brady kept saying "Sissy, Sissy" like hey look at her, look what she is doing! He is such a good brother - even though he does run over her like a speed bump in the road!

That is all for now.....

Christmas was so much fun!

This year we did our "Christmas morning" early because Larry was working Christmas Day. We were both up pretty early because Larry wanted to get fresh cinnamon rolls from Ginger Brown's and so I got up with him and we started our day. I think we were up for about an hour before either of the kids woke up! Angelina was first so she got to see what Santa brought! She really loves this drum and is pretty excited about some other gifts she got as well. Brady got a trike from Santa and thought that was pretty cool too!

The kids I think were overwhelmed with all the family stuff but they still had a good time. Angelina got an MP3 player and in this picture she looks like she is really rockin' out and singing!

Ya'll should see our house...it look's like a toy store threw up in here! There is a whole cabinet that we put toys still in their boxes because there is so much new stuff!

They really like everything they received and everyone was so thoughtful! So as Brady would say..... ThatU! (translated that is Thank You!)

Aren't they cute!

If you want to see all the Christmas pictures we had taken go to http://www.capturedmomentsoftime.com/
click on the "Safford" folder and enter the password safford.

Larry's cousin takes the best pictures and she is available for photography work for you as well!

Playing in the leaves

Brady was very appreciative of the nice weather earlier today! He found a bunch of leaves and just started throwing them about and rolling around in them. It was so completely cute! This kid is such a ham and sweet hearted little boy! Can't help but love him to pieces. As his daddy says - Kid, that smile can knock down walls!

Angelina's 24 hr EEG

Angelina went yesterday to Cook Children's for her 24 hr EEG. She did quite well while the tech placed all the probes on her head. She usually screams, cries and throws a huge fit including making herself sick. This time she more or less just whined and griped about it with a few cries here and there. No getting sick though! The day and night were pretty well eventless. Lots of movie watching and playing but nothing else to mention.

The nurse practitioner came in this morning and advised that at a quick read through no seizures were captured. That was great news! Then came time for her to get the probes taken off. That was a complete ordeal! She has such a fit. Caitlyn had come by to see her so I had a helper to keep her hands out of the gluey stuff that was on the probes. Angelina was completely devastated. Her feelings hurt beyond repair, that is until she noticed her movie on and paid attention to that!

She was so glad to be home! That girl slept for almost 4 hours! I guess at any age being at the hospital just takes it out of you.

Well we went to see Santa today! We started the morning off getting breakfast at IHOP, then it was off to the mall! Brady did lots of running around in the kid play area then took a ride on the carousel. He was a very pleased boy! We took a tour around the Santa area and did lots of oohhing and aahhing over the whole thing. Then it was our turn. It never fails - they both can't make a smiling face at the same time! They had fun right up to the end the Brady started to cry. I guess he was done with the whole picture thing. Angelina was please as punch to just be sitting there getting her picture taken! It was very cute! On the way home she told us all about it while Brady snoozed away!

Cookies For Santa

Okay, so I took the kids to my friends house last month because she had a lady there who makes custom plates out of hand and foot prints of children. We ordered a Santa plate because, well, we didn't have one. Anyway, here it is! I personally think it is so cute! Brady's foot print is on the left and Angelina's is on the right. Santa will be impressed that these little darlings made a plate just for him!

I don't know if anyone saw this, but last night on Channel 5 Angelina's neurologist was part of a news story about a boy who underwent a surgery called Deep Brain Stimulation. This is significant because while Angelina doesn't have the same kind of problem this kid did, she does have a type of dystonia and DBS helps to correct this. Dr. Acosta says right now they don't do this on anyone under 7 but when she gets older she could be a candidate before that time. It really is pretty fascinating that her neuro doc is part of a cutting edge team that are the only ones in the U.S. doing this type of thing on kids right now. It further strengthens my faith in Dr. Acosta that he can and will do everything in his power to help her without hurting her. We just love him!

Here are a couple of links to check it out.....

http://www.cookchildrens.org/neurosciences/services/Pages/dbs.aspx

http://www.nbcdfw.com/health/tips_info/North-Texas-Boy-Undergoes-Revolutionary-Brain-Surgery.html

ALSO - Marcey and I are putting together a non-profit corp to raise money to fund therapies that insurance does not cover like Hyperbaric Oxygen therapy and additional PT, OT and ST here at home. Insurance will only cover so many visits, but Dr. Acosta advised that intense therapy (i.e. additional therapy) would be the most beneficial to her right now.

With that being said, our friends Robin and Gregg Truitt - the kids God parents - have an annual Christmas party. This year they took it upon themselves to ask for donations for Angelina to start our fundraising process. They didn't expect more than $50-$100 to be collected but they raised about $300.00. We went to their party and lots of folks were asking for an update or the whole story if we didn't know them. It was nice to see people we didn't' know interested in Angelina. After we left Robin and Gregg talked for a little bit about how special she is to them and how dedicated we are to helping her and that any amount of money can help her.

Needless to say we were very touched by this giving and made sure we sent out a thank you email to let those folks know just what they were giving to. It was a great Christmas Spirit surprise!

Getting Ready For Christmas!!

The kids were excited about putting the Christmas tree up and hanging the stockings! Brady carried the tree skirt around like a cape for a while before letting us put it under the tree. He was so funny! Angelina just starred at the lights and would giggle like they were talking to her. It was too cute. We only have ornaments on the upper part of our tree this year because Brady takes them off and plays with them. I really would like to keep them all in tact for future use. He has a couple of plastic ones on the bottom that he can take off and play with. I guess he figures it's his tree too!

Angelina Updates

Well the week of Thanksgiving Angelina had an outpatient procedure at Cook's to check out her GI tract, take biopsies of her GI tissues and also to place a PH Impedance probe in her esophagus so that they could tell if she was having reflux, get its PH balance, acid content, etc. We got those results back last week. After all this time Larry and I and her therapists are not completely insane....she does have reflux - hence all the non-provoked vomiting! Also it is starting to cause damage to her esophageal area on a microscopic basis. Her doctor doubled her reflux medicine and is giving that six weeks to work. I think that if Angelina is she is still vomiting when we go back to see the doc they will be recommending a surgery called fundoplacation (aka "fundo"). Basically, this procedure would wrap her stomach around the base of her esophagus so that the sphincter would remain closed when she got full and would decrease or eliminate vomiting for her. I really don't want her to have this done, but if she keeps vomiting they way she has been then she will have even more damage in her esophagus, which we don't want either. They she really wouldn't want to try to swallow anything!

Today she only threw-up one time - yeah! She had like an 8 hour stomach bug on Wednesday but got over that and was ready to go the next day. I am hopeful the medicine works, but it seems that when some doctor starts talking about surgery she inevitably has it.

Also, she went back to see her optometrist, Dr. Hunt. He has been seeing her since the beginning. He did both her eye surgeries and we really like him. He has recommended an eye surgery to "straighten" her right eye so that she won't lose sight in it. If you hadn't noticed, her eyes tend to wander out. If we just left it alone eventually she would lose sight in the weaker eye because the brain would just shut one of them off since it can't focus on two different things at once. He is letting us continue to try the drops to see if they help strengthen her right eye, but is not optimistic that there will be any change. We'll see.

We will take her on the 16th to be fitted for leg braces called "AFO's". I can't remember what that stands for right now! Anyway, hopefully she will have them before Christmas. She is doing so well in Physical Therapy and Occupational Therapy. She goes once a week right now and the therapists are doing their session together to get the best result for her. She seems to be responding to it pretty well. I think it helps that Briddy (PT) is there with the Debbie (OT) since OT is so new and Angelina doesn't really know her yet. She really likes Briddy though. She also goes to Speech Therapy once a week as well but since her vomiting had increased she hasn't really been doing all that well lately. We have stopped giving her pureed and now we are using flat suckers and graham cracker crumbs! That is more fun anyway. She does really well with these two different textures and seems not to be afraid to swallow the crumbs. Jana (ST) thinks that once the reflux is under control she will be more willing to try to swallow food. It is what it is and I am not so much worried about the eating food thing as I am getting her motivated to want to crawl or push to sitting, things like that. Poor vision begets lack of motivation to try to get to things one really can't see anyway!

That is all for the medical side of updates right now!