Thursday, January 15, 2009
Golf Tournament update
The fundraising for the golf tournament is going so well. We have 5 holes sponsored and I think we will have around 10 teams playing! The raffle items we have collected have been so generous and we are still receiving more. The ticket sales for that are going well too! I really think this event is going to be more successful than we originally thought!
Angelina got her Leg Braces!!
YEAH! Angelina got her leg braces! We had to go back though because they will have to be remade. They are just a bit too big and that won't work for what she needs! She should have them back in a little over a week or so.
She has been able to stand leaning on the ottoman playing with a toy UNASSISTED!! She is doing so well and we will be much more happy to have the new braces.
Thursday, January 1, 2009
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.....
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.....
Happy New Year!
We had a great New Year's eve beginning the day with Physical Therapy at Cook's. She had such a great session! She was sitting up well and trying to get the toys while on her belly. It was really great to see her not have a fit on her tummy! She chair sat well keeping both feet on the floor, at least for a little while, and while sitting on her knees she brought her herself up to directly on her knees all by herself! That as very encouraging.
She has been saying "dayee" for daddy every now and again. I guess she hears Brady saying it like that and is trying to do the same! I haven't heard the official report on her EEG yet, but I will be talking to her neuro nurse, Sheila, on Monday to get the scoop on that.
She still has a lot of mucous going on and I am hopeful the Mucinex will work to get rid of that. Once that is done I can increase the medicine that helps with her tone.
That is all for now!
She has been saying "dayee" for daddy every now and again. I guess she hears Brady saying it like that and is trying to do the same! I haven't heard the official report on her EEG yet, but I will be talking to her neuro nurse, Sheila, on Monday to get the scoop on that.
She still has a lot of mucous going on and I am hopeful the Mucinex will work to get rid of that. Once that is done I can increase the medicine that helps with her tone.
That is all for now!
Monday, December 22, 2008
Angelina's 24 hr EEG
Angelina went on December 18th 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.
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.
TeamAngelina.org has been launched!
Today Marcey has gotten our foundation website launched so that we can begin to receive donations and golf tournament sign ups. It is a work in progress so please bear with us and if you have any pictures you want to add, please email them to me at alsafford@sbcglobal.net! We will be adding a picture page as well!
Sunday, December 14, 2008
Angelina's Neurologist on Channel 5 and other stuff...
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!
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!
Subscribe to:
Posts (Atom)
