Angelina's HBOT Update...It's Over!

The kids sacked out on the Big Bed!

Brady playing room receptionist

It's FINALLY over! I knew it was going to be trying but geesh! The kids are going to be glad to wake up and not have to get ready to go anywhere! We are all ready to get things back to normal and now that Angelina's treatment is over life can begin to settle down again.
These are the techs that made our lives easier while we were at their office. Edith and Trey were great! They were so accommodating and easy going. There's a family room at this office and lucky for us there usually wasn't anyone else waiting around while we were there so we had it all to ourselves. Instead of hanging out in the car I set Angelina up on the futon they had so she could nap while she was hooked up to her food. I fed Cirstyn in there while her treatment was in progress without being in the way or making anyone feel uncomfortable. Edith has a 2 month old little girl and would bring her on the weekends - she's so cute! Anyway, their hospitality made the last 3.5 weeks better than I initially thought they would be.I think she is responding well to this therapy already. She has been listening to command phrases and actually responding to them. We were sitting in the floor and I was helping her to stay upright. I told her a few times to put her hands back down on the floor and she wouldn't' fall over - and she did it! She sat up for about 5 minutes playing! That was pretty cool. Also, yesterday she was babbling on and she sat straight up and clearly said MAMA DADA. She has been saying mama and dada for a while now, but this was different. She usually says mamamamama or dadadadada but this was very clear. Larry and I looked at each other as if to say "did she really just say that??"Now it's back to the regular schedule and back to therapy. I hope her therapists see some differences. If nothing else, I think they will think she's grown since they last saw her 4 weeks ago! She was scheduled to get BOTOX again last Thursday but we decided to hold off for a couple of months to see if the HBOT helps and the Craniosacral Manipulation Therapy as well.Larry and I took Angelina to meet with the EMISD Diagnostician to talk about starting her in the special education program just after her third birthday. It was pretty much an informational meeting. They got all the medical info on Angelina we could provide, explained the program and we made additional appointments to meet with their therapists. Basically she would go for 3 hours per day during the week, more than likely in the morning from 8-11 am. Therapy provided would be administered from an educational standpoint rather than from a medical standpoint and the variation will be good for her. It will be difficult for Larry and I to leave her at a place where we don't know the caregiver personally but they did say we could stay as long as we needed to be comfortable. Maybe I should plant a nanny-cam on her! :)

HBOT Update - Angelina is doing very well!

Okay so Angelina started HBOT on Monday 10/26 and she is doing quite well with it. The tech told me that they would do the first "dive" to see how she handles it and if she can clear her ears then we would discuss payment. Well she did very well, in fact she didn't even act like she noticed it at all! She was staring up at the TV in amazement like she was thinking "how'd that get up there??" That was that! I turned over the payment and now we are on the stick for 3 more weeks! Angelina has a good time in the chamber watching a movie or taking a quick snooze. I was sort of surprised that she acclimated herself so well and so quickly! Such a big girl she is!! It took almost 1.5 hours to get home and I was tired from all the rain and the day and was not looking forward to making dinner. I swear somebody upstairs likes me a little because Larry called to tell me that his mom brought dinner for us - hamberger pie and salad! I was so happy that kind of made the rain not suck so bad!

Yesterday we had a bit of a vehicle issue. Larry made out this nice pallate in the back of the van for Angelina to nap on while she was having her lunch and since it was warmer yesterday we needed some airflow. Not remembering that having the electric on in the car while the engine is off drains the battery (I was just concerned about the temp in there and my girly) I proceeded to completely kill the battery. NOW in my defense, I called Larry to check in with him and had he answered the phone or called me back before a whole hour passed by all this could have been avoided because I would have told him what I was doing and he would have told me about the whole battery dying thing. BUT he didn't call me back or text me back for an hour or so. Luckily some random guy must have heard the ticking of my dead car as I tried to turn her over and tapped on my window advising me that my battery was dead....ummm thank you I'm perfectly aware my car is dead. As it would turn out he helped me get the car jumped off. I started off the day saying a short prayer to keep us safe and get us home safely. Nevermind that he had just come from the Jason's Deli for lunch - with his AA group - he told me that he had 3 sisters and would hope that someone would help them out. Who was I to question the package my help was delivered in?? It was kind of awkward because I was holding Angelina (she hadn't gone back in for her 2nd dive just yet) and needed to take her back to the HBOT office but didn't want to lose this guy's help. God works in mysterious ways. He assured me that he would wait for me to come back. When I came back there were people showing up to help and I had no clue how they knew it was me that needed the help, but they knew. Now I thought I had jumper cables because I had purchased some specifically for an occasion such as this but they were nowhere to be found. I call Larry to find out just where they are and he says they are in the garage by his car. Of course they are. Luckily one of the girls in the HBOT office had cables and let me use them. Longer story shortened, we got the van started and it took us home an hour later! Yeah!

Cirstyn went with us today and needless to say we did not stay in the van for naps we used the HBOT's office family room since no one else was using it. All went well and we look forward to a good visit tomorrow!

Hyperbaric Oxygen Therapy here we come!

Angelina starts HBOT at the Hyperbaric Centers Of Texas in Richardson tomorrow (10/26). She will have 2 sessions per day 6 days per week for 3.5 weeks! So she and I will be travel partners for the next three weeks back and forth...everyday...until 11/19. I have to admit while I am excited about her finally beginning to start this therapy I am apprehensive about the drive and the time commitment each day. We will leave around 9:30 a.m. and won't return home until 4:30 or 5:00 p.m. Now I realize that is less than the typical work day for most but I think Cirstyn and Brady will be non-to-thrilled with me being gone all that time. I would like to take Cirstyn with me but Larry and I agree that exposing her to others during flu season isn't the wisest choice so she will be bottling some and I will be pumping while we're gone. Brady will still go to MDO on Monday and Wednesday so those days he probably won't be to crabby about me not being there when he gets home, but the other 4 days I think he will! I am hopeful he will just have fun. Larry is going to stay up tomorrow morning, take Brady to MDO and stay with Cirstyn. Brandie Jo is coming by for a couple of hours so Larry can take a nap until I get home. He will be in charge Tuesday and Wednesday as well. Karen has taken Thursdays, Nanny has Fridays and Mom has Saturdays.

I am going to take my camera and video camera in case they will let me take pictures. It's supposed to be really simple. She will just lay on a bed inside this large plastic clear cylinder and breathe. She will have a TV and I am going to take some DVD's she likes in case there is a DVD player hooked up. They call the sessions "dives" because it's pressurized like being underwater and I am hopeful that she will be able to clear her ears when each dive is over. I will make sure to take a sippy cup to give her water so that she has to swallow to clear her ears. Dr. Johnson told us that if she can't he can just "pop in some tubes" so she can. We'll see. We had the option to let her use the single person chamber or the group chamber. If she used the group chamber then I would sit in the room with her but she would have a helmet like device on her head to administer the oxygen through. When the tech told us that Larry and I looked at each other and in unison said "the single chamber please!" Originally we thought that she would do better in the group chamber but when he told us about the helmet, well that was the end of that! I so hope she does well with the process and that her body will respond this therapy. Not in the "miracle cure" way but just being a little more coordinated.

Now that I think about it, this time last year is when I started doing research on alternative treatments and therapies to help my beautiful little girl. I was doing research on stem cell therapy and found the info on HBOT. I haven't given up hope yet on stem cell therapy and am hopeful that someone will be doing "donor cord blood" stem cell therapy soon. The latest that I have heard on that from the Dr. at Univ of Arizona is that they are having to reapply for funding to start that research. I can't believe it's been a year already since all of this started. Angelina has changed so much since then and all for the better. Larry and I have always said that if there was no more progress with her and she stayed the way she is that would be okay with us, but we have to give her the opportunity to heal just a little if she can. She has made lots of really great progress this year with all of her therapy and she knows she can do more things now. I can see it in her eyes when she is trying to get up but just can't quite get there. I can see the words running through her mind - I think I can, I think I can. Angelina just amazes me. She makes me remember that no matter how bad I think it is, I can find a smile so that means it's all okay. Larry was right when he told me that God gave her to us to teach us patience. I remember this when I get frustrated with the monotony of the routine or the endless appointments. She truly is a blessing in so many ways. She continues to be the little engine that could....little by little! :)

More Than A Massage

I subscribe to Dallas/Fort Worth/ North Texas Child and they have started a new magazine called Dallas/Fort Worth THRIVE. THRIVE is a magazine specifically designed as a resource for special needs kids and their parents. Today I received my usual daily email and the new THRIVE October issue was out. So I clicked my way to see what it had in store. The first article I clicked on was More Than A Massage. To my surprise it is an article about Craniosacral Therapy - the same therapy Angelina is having done now! I thought this was so cool so I am sharing with you now! Here's the article and here is the link......

MORE THAN A MASSAGE

It looks and feels like a relaxing massage. But what’s going on during craniosacral therapy (CST) is much more technical than it looks.The massage look of CST is actually the trained hands of a doctor releasing restrictions of the cerebrospinal fluid. This fluid affects the central nervous system, which controls just about everything. When the fluid is moving as it should, our body’s central nervous system functions optimally. Sally Fryer, founder of Interactive Pediatric Therapy in Dallas, says she was skeptical upon first learning about the technique founded by Dr. John Upledger, who developed the technique in the ’70s. She attended a seminar intending to prove to herself that the therapy was inconsequential. But, she proved herself wrong instead. Now she believes anyone can benefit from CST. She uses it often for kids with gastric problems, sleep disturbances, eating issues, sensory and attention issues, seizure disorders and autism. “In my experience of over 30 years,” she says, “I have never seen kids go as far or as fast as the kids who combine other therapies with craniosacral work.”

www.dfwthrivemagazine.com

Angelina and the Chocolate Explosion!

Okay, so Angelina has been doing really well with her Speech Therapy and tolerating food lately! So this evening we were having chicken alfredo and I decided Angelina needed to have some as well - the sauce anyway. I mashed up some of the noodles with the sauce and she really took it well. There were so many bits in her mouth but no gagging or getting choked up. She really does like Mama's alfredo sauce! The best thing about all this is that she is engaging the food by leaning forward to "get" some or helps with her sippy cup by putting her hand on it and pulling it forward.

After all the alfredo I decided she needed a desert as a treat for all her hard work - Swiss Miss swirl chocolate pudding! All I did was open it at first and set the cup in front of her. She started putting her hands in it and when she did I would just dunk them down farther so more of her hand would be covered in the pudding. She tasted some off of her hands and I was putting globs in her mouth. Again, no gagging or choking up! She had a good time with it as you can tell!

Angelina has new equipment and new moves!

Yesterday I took Angelina to her usual therapy sessions but it was a special day because she received the Wiggles Stander and the bath chair we have been waiting for! She really enjoys being in the stander. She can play freely with toys because it has a tray to set things on and she does quite well in it! We have been advised to only allow her in it for 15 minutes several times per day then increasing that amount of time by 5 minute increments to get up to 45 minutes.
I am so proud of this girl right now. She is doing so well with her therapy sessions and she tries so hard to sit up by herself. She is almost there! She gets up on her elbow or even up on her extended arm, but just hasn't quite figured out how to get the rest of the way up. Angelina's oral aversion has been so desensitized since we started this whole process and now she will take drinks of "pink milk" aka strawberry Pediasure. After the first taste she grabs at the cup and leans forward to get to the cup. I always ask her to take a drink so she sees that she has to want to get some before there is any in her mouth. She likes iced animal cookies and can pick one up from her tray and actually put it in her mouth. She gets a little bit of crumb on her tongue but she doesn't reject it and keeps trying to get more.

On August 6 she had her first BOTOX treatment and a week after that we started with the Craniosacral Osteopathic Manipulation (COM) therapy. I asked her physical therapist yesterday what her opinion was about the COM and she thinks it is playing a good part in all this good stuff she is doing. She said that BOTOX weakens the muscle to allow for stretching and easier movement but does nothing for intentional fluidity of movements. I was so happy to hear that! FINALLY something is working for Angelina! Larry and I learned a long time ago to live in the reality of her condition, basically don't be naive about what she can and can't do, and with that in mind keep ourselves open to lots of hope. I know now that moments like these that she has been having, seeing the lights come on inside her, make it all worth keeping feelings and expectations at bay until it's time to unleash them! I do have have high expectations for her but some of those come with a big dose of hope.

Moving on.....I found out that once Angelina turns 3 - this January - she will be eligible to attend school district pre-school. I am excited about this for her because that means she will be getting therapy EVERY DAY of the week in addition to the PT, OT and ST we do with Cook Children's. She will have role models to try to follow and do the things they are doing as well as social interaction with other children that are similar to her. On the other hand, it really freaks me out to think that I will have to leave her with teachers of whom I hope are capable of caring for her. I will be able to observe for as long as I want until I'm comfortable and I know I will reach that level sooner than I think but it still give me anxiety to think of leaving her. It will be a million times harder than it was leaving Brady with the church ladies for mother's day out. Not because I love him less but because he can tell me if something is wrong. With Angelina I would have to see physical marks or try to interpret her social cues. I am really trying not to play the "worst-thing-that-can-happen-to-your-kid" game inside my head but it's hard.

I have also found a type of therapy called Conductive Education. There is a place in Dallas that has a program and I am in the process of researching that now. In a nutshell it basically is intensive, aggressive physical activity made out to be fun. The kids go for 5 hours per day for 5 days per week for like 4 or 5 weeks. It's a commitment but if it can help her then I think it's worth going to. By doing repetitious movements and exercises the brain has the ability to "re-route" pathways for telling the body how to move. Angelina's therapists are torn about it. One had a patient similar to Angelina that really responded well to Conductive Education. The other had a patient that didn't. However, the one that didn't respond well had low (floppy) tone and she wasn't strong in her joints. While she's not totally signing off on this that same therapist thinks that Angelina would respond well to it because her muscles are strong from the work we've been doing and she doesn't have loose joints to watch out for. Plus, they both agree that I have been doing this with them long enough that I know what my child's limitations are and would know if they were moving her in a way that wasn't good for her. SO, more on that when I have more information.

Angelina also has an appointment with Dr. Johnson in Richardson to talk about Hyperbaric Oxygen Therapy (HBOT). I am so glad to finally get an appointment with him to see what he recommends for her. More on that after next Wednesday!

Okay, I am out of typing breath!!!

Report on Angelina's 2nd Craniosacral Manipulation...

Angelina had her second Craniosacral Osteopathic Manipulation Therapy. She was so much more relaxed this time! Dr. Teitelbaum and I discussed if I had seen any changes and I thought she was a bit more fluid in her movements but wasn't sure if it was from the therapy or BOTOX. I also asked him if this could help with her GI problems. He said that there are cases where it does for colic and reflux in babies (could have used that info 2 years ago!) and that we would try it as well. Angelina wasn't objectionable at all this time. She smiled at him and tugged on his shirt cuff. She was even trying to do her "dancing" as well. We go back the next 2 Mondays then we will re-evaluate her progress.

BOTOX for the 2 year old!

I took Angelina in to see Dr. Acosta for her first round of BOTOX injections.When we got there she was kind of sleepy so by the time we got into a room and Dr. A and his nurse Sheila came in to get things going, Angelina was completely out. She wasn't too happy with us waking her but she quickly got over that. I held her hands so she couldn't wave them about and I felt like I was sabotaging her. One second she was happy and laughing the next was filled with alligator tears, screaming bloody murder and "mama..mamamama..nononono...mamama". She had 12 injections total and she was super pissed about it! Prior to all this Sheila and Dr. A both asked if I was okay with everything. Apparently I looked sort of stressed out about it all. Of course I was tired, but I wasn't looking forward to Angelina having all those injections. I just kept praying that we were making the right decision. With all the things that have happened to Angelina done with the best intentions I always question whether it's the right thing to do for her and pray we are making the right decision. It seems that things always turn out for the best, but this just made me nervous.

ANYWAY, Angelina got over the shots pretty quickly and Dr. A talked with me about what to watch for in the next 24 hours as signs of overmedication. He assured me that he didn't think we had anything to worry about, but nonetheless we needed to know just in case. This was a little unnerving but I decided to focus on the positive. While we were waiting to check out Sheila and I were talking about one of her medicines that she started taking again for tone. It can cause seizures and we had noticed a few things that just didn't seem right. Luckily, Angelina displayed a little seizure like facial expression so we decided to completely stop that medicine and roll with just the Artane - which I think is working just fine.

Dr. A said that we should see some changes in about a week from the BOTOX and that it will probably peak in between 1-2 months. He wanted us to be aware of when we thought it was wearing off so that we know how long it lasts for her. We go back in three months for the next round!

Angelina's first Craniosacral Osteopathic Manipulation therapy

On July 28th I took Angelina to see Dr. Teitelbaum, an osteopathic doctor, to talk to him about a therapy called Craniosacral Osteopathic Manipulation. Her therapists said that it couldn't hurt and if her body responded to it then great, but if not then no harm done. Her docs agreed as well so we went. Dr. T said that in his experience kids with CP saw an improvement in their spasticity and wanted me to understand that it wasn't going to be a miracle cure. I assured him that we live in the reality of her condition and that we are always looking for ways to improve her quality of life and that we were not naive about any kind of therapy she receives as a miracle cure. she did relatively well only whining some when he was messing with her head and neck. He is going to see her on a trial basis for 6 sessions to see how well she responds to the therapy. If she has some response then we will go forward with more, if not then we will look for other alternatives at that time. He was soft spoken but very friendly and Angelina responded well to him. This is his website if you want to read anything about this practice as well - http://www.doctor-t.com/.

This technique applies gentle pressure to specific points on one's spine, neck and base of the head to manipulate nerve endings. Well see if she responds. I am hopeful that she does because she could sure use something in her life that works for her that isn't medicine!

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!

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.

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.....

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!