Angelina was having a few bad days this last week and we made a 5:30 a.m. call to the on-call surgeon because we were quite concerned about this brownish sludge coming out of her g-button. I have to admit it freaked me out pretty good because her regular surgeon told us to be on the look out for greenish or dark brownish stuff coming out of her belly. Well, the on-call surgeon was a complete prick and pretty much told us we shouldn't have disturbed him that early in the morning - umm HELLO we don't hold medical degrees or a surgical licenses and hence didn't not know that she wasn't in any danger! I was so flippin' mad I couldn't even go back to sleep once I got Angelina back in bed. Doesn't that jerk know how special she is?? He should consider himself lucky he got a call concerning her! He needs to get a clue!
Since then however her belly has been better. She had a day or so after that where she was wretching alot, so that was what was causing the brownish tint to her stomach product. She may have loosened a stitch and it seeped blood. The last few days she has been much better though. She has been able to better control the wretching urge to try to vomit. Like today she probably did it only a few times rather than at least once an hour all day long!
Good news though - she hasn't thrown up in almost 3 weeks! I took her to see her GI doc today and they have advised us not to refill her Prevacid since she can't reflux into her esophagus. We just have to be mindful of her to tell if she is having stomach pain from acid. She hasn't had any Prevacid for like 3 or 4 days now and has been okay. One less medicine to take yeah!
Angelina will start back with all her therapies this week as well! I am hopeful that speech therapy will pick up well and she will be able to handle a bit more. We are going to try to work in another day for therapy during the week as well. Next, I have to make an appointment with a doctor we have been referred to for Hyperbaric Oxygen Therapy. That will be the first thing we do with the funds that were raised by the golf tournament. I am excited to get that underway!
Oh, her eyes are looking so good. They don't wander to the outside at all now. They will go in just a little, but her optomologist said that would happen for a bit until the muscles adjust. She is so pretty! Her eyes are just looking so good! It's like she is able to focus better on the things she is paying attention to.
Monday, March 23, 2009
Monday, March 16, 2009
Okay so Angelina was admitted to Cook Children's on 3/4/09 to have the fundoplacation and stribismus (eye) surgeries. She remained there until 3/6. All went well with her surgeries and she seemed to be doing well with adjusting to the "fundo" on her tummy. We get home and at least Larry and I were not naive enough to think the worst was over. Our goal was to try to keep her from wretching now that she can't vomit anymore. We didn't want her to undo her fundo - which can happen with alot of wretching. All our usual stops were not working and we were frustrated and very concerned. Her surgeon and GI doc gave us some tips to try and we also added Mylecon drops as well. They all seemed to be working but a couple of days later she was coughing what seemed to be ALL NIGHT LONG! Two nights of that and we were now looking in another direction.
I had planned on attending the meeting last week, looking forward to spa night, but Angelina was having such a hard time that day so I decided to stay home. We were concerned with her breathing because she had started to wheeze just a little, but we didn't want it to get out of hand. Her pulmonologist advised us to give her breathing treatments every 4 hours so we commenced with that. This was the second of the coughing nights with little to no sleep. At 7:30 am she still wasn't doing very well so we spoke with the on-call pulmonologist and were advised to head down to Cook Children's. Luckily there was pretty much no one in the waiting room so we got her right in. After assessment and tests, it was deemed she has bronchiolitis. The told us that we might be waiting for aoug 8 hours to get an assigned room - YIKES! Fortunatly, Larry works at Cook's and he knew the charge nurse in the unit Angelina was bound for so he worked his magic and we only had to wait 4 hours to get into the room. She stayed at Cook's from 3/11 (which happened to be Larry's birthday) to 3/14. She was so lethargic at first, but after the first day and a half she started to want to play again and getting back to her old self. She finally was on room air except for sleeping. She just wasn't able to hold her oxygen level up with out a little help. Larry and I took turns staying the night with her. He was working as well so he had a little more than his fair share of being at that place!
Poor Brady was so tired of seeing my grandmother and Larry's mom! When one of them would come to the house to take over, he would tell them to go home and cling to my leg! It was so sad. The whole ordeal made him constipated and needy. I felt so badly for him! He missed all of us and we missed him terribly.
We finally go to take her home on Saturday. She has been alot better even though she still is trying to get back to normal. Her medicines make her really tired, now that she is keeping them all down and so we are going through the process of getting used to them again. She does better with the breathing treatments here rather than at the hospital so that is a plus.
I am just ready for a little normalcy to return to our household!
Soon hopefully, but then by that time baby #3 will be here to cause an uproar of it's own!
I had planned on attending the meeting last week, looking forward to spa night, but Angelina was having such a hard time that day so I decided to stay home. We were concerned with her breathing because she had started to wheeze just a little, but we didn't want it to get out of hand. Her pulmonologist advised us to give her breathing treatments every 4 hours so we commenced with that. This was the second of the coughing nights with little to no sleep. At 7:30 am she still wasn't doing very well so we spoke with the on-call pulmonologist and were advised to head down to Cook Children's. Luckily there was pretty much no one in the waiting room so we got her right in. After assessment and tests, it was deemed she has bronchiolitis. The told us that we might be waiting for aoug 8 hours to get an assigned room - YIKES! Fortunatly, Larry works at Cook's and he knew the charge nurse in the unit Angelina was bound for so he worked his magic and we only had to wait 4 hours to get into the room. She stayed at Cook's from 3/11 (which happened to be Larry's birthday) to 3/14. She was so lethargic at first, but after the first day and a half she started to want to play again and getting back to her old self. She finally was on room air except for sleeping. She just wasn't able to hold her oxygen level up with out a little help. Larry and I took turns staying the night with her. He was working as well so he had a little more than his fair share of being at that place!
Poor Brady was so tired of seeing my grandmother and Larry's mom! When one of them would come to the house to take over, he would tell them to go home and cling to my leg! It was so sad. The whole ordeal made him constipated and needy. I felt so badly for him! He missed all of us and we missed him terribly.
We finally go to take her home on Saturday. She has been alot better even though she still is trying to get back to normal. Her medicines make her really tired, now that she is keeping them all down and so we are going through the process of getting used to them again. She does better with the breathing treatments here rather than at the hospital so that is a plus.
I am just ready for a little normalcy to return to our household!
Soon hopefully, but then by that time baby #3 will be here to cause an uproar of it's own!
Friday, February 20, 2009
The Golf Tournament was a HUGE Success!
Yesterday 54 golfers came to play and a host of others showed up during the day and for the raffle to show their support! Although the hard numbers are not final just yet, Angelina Safford Charities, Inc. was able to raise just over $15,500 in this inaugural event!
The golfers were so patient during registration because we were signing people in taking money and selling raffle tickets all at the same table! They bought an amazing amount of Mulligan's to help their golf game that came out to be around $500.00 for the day!
Brad Hicky's team won the tournament and made such a touching gesture of giving the foundation back each of the $50.00 Visa Cards that were apart of the prize bags! I can't tell you how taken back I was to see them do this. Chad Tipton won the "Closest-to-Pin" contest and Joe Loughman won the "Longest Drive" contest each winning a $50.00 restaurant gift card.
Kevin Hall was the big winner as he gets to enjoy the 32" LCD Flat Panel Television! He wasn't there, but many of his co-workers were and we all applauded him. There were several guys offering to "take the TV to him" but we knew what their motives were! Surprisingly a lot of the raffle items were won by supporters who were attending the event. I was really glad to see that! I think we should name Nester Martinez as the "Most winning raffler" as I believe he won like 5 different prizes that were really pretty good!
Blanca Sherwin donated ceramic tumblers that had Angelina's footprint on it that she made into an angel. On the back read "Sometimes angles need help to fly" which really does sum up what the foundation is all about - helping her and other kids with CP soar to success! They were for sale for a minimum $10.00 donation and we nearly sold all of them! THANK YOU BLANCA!!! Thank you so much to everyone that donated, played, bought a raffle ticket, sent prayers, gave prizes and all the other things I can't think of right now (we will blame this on my pregnant brain)!! Without all of you NONE of this would have been possible!
My poor sister got called out of the country for work during the process of putting everything together and did absolutely as much as she could from Saudi, the plane, DC and other places like that! Larry and I were so thankful that my very good friends Robin Truitt and Lisa English were able to step in and help us get everything together. From selling raffle tickets, picking up prizes, and many other things they did it! It took a HUGE amount of pressure of me and helped me enjoy things a lot more.
There was a lot of talk about when we were going to do the next event so the Board will be getting together to put together a plan of action for more events throughout the year. That way we can email them out for all to "Save The Date" and plan for with much more advance notice than this event! I can't believe we pulled this tournament off originally in about 30 days, but with the ice delay we got an extra 3 weeks to make double sure we had everything we needed! God works in such a great and mysterious way and he had his hand in all that made this event happen.
This weekend I am making a valiant effort to get everything posted on the foundation's website www.TeamAngelina.org so that all the sponsors, donators and winners can be viewed! Also, we will be posting pictures as well.
Okay, that's all for now!
The golfers were so patient during registration because we were signing people in taking money and selling raffle tickets all at the same table! They bought an amazing amount of Mulligan's to help their golf game that came out to be around $500.00 for the day!
Brad Hicky's team won the tournament and made such a touching gesture of giving the foundation back each of the $50.00 Visa Cards that were apart of the prize bags! I can't tell you how taken back I was to see them do this. Chad Tipton won the "Closest-to-Pin" contest and Joe Loughman won the "Longest Drive" contest each winning a $50.00 restaurant gift card.
Kevin Hall was the big winner as he gets to enjoy the 32" LCD Flat Panel Television! He wasn't there, but many of his co-workers were and we all applauded him. There were several guys offering to "take the TV to him" but we knew what their motives were! Surprisingly a lot of the raffle items were won by supporters who were attending the event. I was really glad to see that! I think we should name Nester Martinez as the "Most winning raffler" as I believe he won like 5 different prizes that were really pretty good!
Blanca Sherwin donated ceramic tumblers that had Angelina's footprint on it that she made into an angel. On the back read "Sometimes angles need help to fly" which really does sum up what the foundation is all about - helping her and other kids with CP soar to success! They were for sale for a minimum $10.00 donation and we nearly sold all of them! THANK YOU BLANCA!!! Thank you so much to everyone that donated, played, bought a raffle ticket, sent prayers, gave prizes and all the other things I can't think of right now (we will blame this on my pregnant brain)!! Without all of you NONE of this would have been possible!
My poor sister got called out of the country for work during the process of putting everything together and did absolutely as much as she could from Saudi, the plane, DC and other places like that! Larry and I were so thankful that my very good friends Robin Truitt and Lisa English were able to step in and help us get everything together. From selling raffle tickets, picking up prizes, and many other things they did it! It took a HUGE amount of pressure of me and helped me enjoy things a lot more.
There was a lot of talk about when we were going to do the next event so the Board will be getting together to put together a plan of action for more events throughout the year. That way we can email them out for all to "Save The Date" and plan for with much more advance notice than this event! I can't believe we pulled this tournament off originally in about 30 days, but with the ice delay we got an extra 3 weeks to make double sure we had everything we needed! God works in such a great and mysterious way and he had his hand in all that made this event happen.
This weekend I am making a valiant effort to get everything posted on the foundation's website www.TeamAngelina.org so that all the sponsors, donators and winners can be viewed! Also, we will be posting pictures as well.
Okay, that's all for now!
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!
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