Angelina's progress post surgery and sickness!

Now that my little lady is feeling so much better and enjoying vomit-free life she has been doing so well with all her therapy sessions. Today we had all three starting with Occupational Therapy (fine motor movements). She did very well with disassociating her top from her bottom and really getting good rotation to reach her toys. She is really trying to pick things up with her finger and thumb now. I told her therapist, Ms. Mary, that yesterday we were playing and I told her to give me five and she actually found my hand and gave me a few fives! She did this with both hands separately. It was great! Physical therapy is going good as well. She still doesn't' like to be on her tummy, but sometimes life doesn't care what we like just what we need. She is trying to scoot across the floor though as long as we can keep her from flipping back over on to her back. She has been working on staying upright on her legs and can really control the top portion of her body if we hold on to her waist. She even takes steps to get to toys. All of this is with assistance, but she couldn't do this 6 months ago so this is quite a big change! Speech therapy is good too! She can handle bigger bites with little or no gagging. But even if she does gag she is able to recover without assistance or distraction. That is HUGE!! We are trying to get in 2 "food" session per day at home. She really likes mac-n-cheese and also Alfredo sauce. Apparently she is a savory girl and not a sweet girl! I am trying to get her an appointment with the ortho (leg braces) therapist either through her usual therapy sessions or through her neurologist's office. We need to have her braces looked at and adjusted. She can still wiggle her heel out of where it is supposed to stay and that pretty much makes the braces ineffective and somewhat painful to be in. It's causing a rubbed place on her left big toe that is beginning to be an issue. Hopefully we can get this resolves sooner rather than later. No news on the new chair she is supposed to be getting. That will probably be here mid-summer. Oh the joys of bureaucratic insurance!!! We are also working on adjusting her stroller to be more accommodating so that she doesn't slide down and can keep her hips and pelvis posture correctly. That is a work in progress though. Her PT is trying to keep her out of a wheelchair for as long as possible because you can only get one every 5 years and that leaves little growing room. We'll see how it goes.I think that is all for now. Angelina is doing really great and we couldn't be happier or more proud of her!

Life is much better today

Angelina is feeling so much better now! She went to therapy yesterday and didn't have such a good time but she just got tired much faster than normal. I guess her energy level hasn't totally recovered, but she is not trying to vomit and wretch like before. Now it's only every once in a while. No more seizures either! We will be taking her to have an in-office EEG at the end of April so that we can see if the change in her medication is still okay and keeping her partial seizures at bay.

Angelina has had her first spastic seizure :(

Larry and I knew it would eventually happen but not in the middle of the night. This morning around 2:30 a.m. I went to check on Angelina because she was making weird noises and found her in the middle of a full on spastic seizure. I couldn't see her very well at first because I was half asleep and her night light isn't very bright. Her arms were flexed out stiff as well as her legs, she was breathing erratically and making a weird smacking sound with her mouth. Her eyes were fluttering uncontrollably. I shouted at Larry through the monitor to get up quick - she was seizing! He ran into her room and I asked him to see what time it was so we could tell how long it lasted and to get the phone. I rolled her onto her side and swiped her mouth just in case there was anything in there. He called the on-call neurologist and explained what was happening. Once she stopped twitching she had her eyes closed but still breathing erratically. She had her jaws clenched shut and I was afraid she would bite her tongue or cheek so I pryed her mouth open at the back of her jaw. This made her cry - FINALLY. Larry was still on the phone with the doc when she started crying so this was a big sign of relief. He advised us not to take her to Cook Children's just yet because she would probably be acting fine by that time and we would just sit and wait, but if it happened again to take her in and call him back.Angelina contracted the stomach bug Brady had and yesterday her pediatrician's office advised us to give her Kaopectate and Imodium. She had diarrhea pretty badly but was keeping down the Pedialyte - not that she had a choice. Apparently, when a child has something like this and has a fundo like she does it's not a good idea to give those kinds of medicines because the child can't throw up. So what happened was that her gut just clogged up and the bacteria festered. When a person is seizure prone sickness makes that person more susceptible to seizures. Things I did not know! Anyway, she came to bed with us and about an hour later Brady joined us. So we four slept (sort of) sandwiched on my bed. Poor Larry had to get up at 5:45 am to go to work and needless to say neither of us really got any sleep after that. She is acting okay today and I haven't seen any other seizure activity as of yet. Her neuro nurse says that it very well could happen again maybe even a couple of times before she is well. She called in a prescription for Angelina that will stop the seizures if they happen again. This is a relief to have on hand. I just hope we don't have to use it!

Today is a better day!

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.

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!

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!

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!