All the hard work is actually paying off!

OMG it seems that since the HBOT Angelina has really come out of her shell more so than before.  She has been doing so many things that she wasn't able to before.  She's been taking steps when held upright, she can take steps with a walker at therapy, eating food is getting SO MUCH BETTER, she's staying limber (for her), she seems so much more aware and has actually been making choices! 

A week ago I took her to see Dr. Teitelbaum for Craniosacral Manipulation Therapy and he was so impressed.  She hadn't seen him in about 2 months (before HBOT) and couldn't believe how loose she still was.  I made sure to tell him that Angelina hadn't been back for BOTOX since August since she has remained loose.  He asked all about the HBOT and how Angelina's responding to it then when it was over he told me that he has never had a patient similar in condition respond to the Craniosacral Manipulation Therapy like she has.  He used the word NEVER and in a good way!  Yay Angelina!  I can't tell you how uplifting that was to hear about my little girl!

Angelina saw her speech therapist, Jana, on Friday and it had been about 3 weeks or so since we saw her last.  Jana was so impressed with how much faster she was swallowing food and actually engaging the spoon with her mouth.  Angelina was grabbing my hand and pulling it toward her face to get what was on the spoon!  It was great! 

She'll be starting school on Monday and I am hopeful that we continue to see postive results.  She'll be in a class with about 7 or so kids, one of which has a wheelchair and leg braces similar to Angelina's.  I hope that is good motivation for her to do more things that are difficult for her right now. 

She's such an inspiration and I just love her so!  In the words of Brady "Great Job Angelina"!

The Cookie Monster!

Okay the last few days have been a culinary wonder for Angelina! Today we were "having" a cookie (aka teething biscuit) and I usually tap it on her teeth because she thinks its funny and I will scrape it along her back teeth to try to initiate a chewing motion. I couldn't believe she actually started to bite down on it and didn't try to fight it out of her mouth! I let go and she kept it in her bite so I snapped a picture then she just grabbed on and handled it herself. She totally demolished this thing! It was a funny scene because we were all at the table and we were telling Brady to look at sissy with the cookie so he says "ooh sissy got a cookie, mmm that's good!" Larry was taking pictures with his cell phone as well.


For the longest time now she has been only taking small bites of baby food probably not more than 1/4 of a jar on a good day. Well, I guess she has decided if the baby can do it, then she can do it too! Now she is able to get about 1 1/2 jars down per day and has been trying to give herself water out of the sippy cup. She can hold onto the handles and bring it up to her mouth but hasn't yet figured out that she has to lift it up to get the water so Mommy helps just a little bit!

This is just another bit of positive response to the HBOT!

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!