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!