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Do you shop at or know someone who does? Click on the link below, or any Amazon link in this blog, to help us earn Amazon Credit in order to buy therapy equipment! Anything you order off Amazon counts! Please bookmark Madi, Ramya and Deena's link and pass it on... every order helps!

Sunday, May 30, 2010

She's growing up!

Tonight Madi wanted to sit on the potty (she's going to kill me when she's older for sharing this picture and story :)) and sat for a while. We sang, brushed our hair, talked, played, and finally she agreed that she was done. When I took her off, there was a tiny, tiny little poop and a tiny tiny little pee! Who would have guessed that at 18 months, she would do that?!?!? I know we are no where near potty-learning, but it's exciting none-the-less. At the same time, though, I could not help but feel some sadness. Not only is my little baby growing up, but the potty is also something I know will never be easy for her. So many of us take for granted that we can sit down, do our business, and be done. For Madi, she will most likely have surgeries to help her stay dry and to fix her renal reflux, and, with all of that, may still have to cath herself multiple times a day and may leak, which is just no fun.  She may have to have a surgery to help her be able to clean out her bowels. There is just no way of knowing now what her long-term needs will be. While I am happy and excited for her accomplishments, I still cannot help but wish life would be easier for her. I know that she is amazingly determined and smart, though, and she will persevere. One day, there will be a surgery that will help her, the technology improves every day! But for today, I will choose to be happy, and rejoice, because we cannot control the future, and worrying over it does nothing but add unnecessary stress.  Here's my beautiful girl:

(Please excuse the dark photo... my camera broke and I have to use my phone camera until I get it back)

Saturday, May 22, 2010

Our Murphy's Law Trip to LA

Murphy's Law: Anything that can go wrong will go wrong (especially if you are in another state and alone with one of your children, trying to juggle a carseat, your child, and your luggage).

Our trip to take Madi to LA was quite an eventful one. Let's just say, we are very happy to be home! Here's a recap of our crazy trip. I had to wake Madi from her nap so we could get to the airport on time. We made good time, but the check-in line for Southwest was unusually busy. We finally made it up to the front and had a nice, but very odd, check in lady who had taken too many NoDoze that day. She said we were technically late check-in, but not to worry, our bag would be fine (I had Madi on me in an Ergo, a backpack filled with our things, and was checking in the carseat, which was in a bag with wheels). We head up to catch our plane and make it through security and in to the plane with no problems. We get a nice man sitting next to us, which is good because you never know who you will end up with. Madi did well in the airplane. The noise startled her at first, but overall she did really well and never cried or anything. We get out of the plane and head to baggage, only to find that our carseat is not there. We had already called Shriners to have a cab sent, and were told that we needed to walk to the Hilton across the street to meet the cab driver, and hurry, because if we were not there in time, the cab driver would leave us. We rush in to the Southwest office and tell them what happened. They check our baggage claim ticket and point out.... it's in someone else's name. After checking, they discover our carseat is in Oakland, though we are in Burbank. They go and get us a loaner carseat, but of course, it does not have a rolling bag to help me lug it around. God is always good to us, though, and He sent us an angel named Rita (a Southwest employee) who volunteered to walk us across the street. She informed us it was a Marriott, not a Hilton so I called Shriners again and they said, yes, it was a Marriott, so as soon as my claim was complete off we go. We talked about our children and it turns out she also was an extended nurser, wore her babies in slings, and, most importantly, was a Christian. She leads a small group and asks if she can pray for Madi... of course,I say, we covet those prayers! She gets me safely to the Marriott but the taxi is not there. Rita gives me her cell phone number and tells me if the taxi does not come, to call her and she will send her husband to get us and bring us to the Ronald McDonald house. We wait and wait, and wait some more, and finally call Shriners again, who checks with the cab company and says that the driver is about a mile away. His company had told him the Hilton by the airport (there isn't one), so he had been driving around confused. The last thing you want is a taxi driver in MORE of a hurry than normal. He finally gets us and helps us load. He looks like a bar bouncer, but has a good heart. He drives like a maniac, swerving and honking, but get where we need to be, laughing while Madi dances to the music he has playing. We get to the Ronald McDonald house around 8:30 pm and he helps me bring my things in. I tip him and he leaves, then I find out I have a packet of information to fill out and a video to watch. I'm tired, I'm hungry, Madi is tired and hungry, and all we want to do is eat and sleep, but we do our duty. After registering they tell us Kwanas had brought in food to the other building, and we are welcome to go eat. YEAH! We exit the house and walk a short distance through an iffy neighborhood at 9 pm. The food was worth it, though, and we both eat our share. We walk back and I get Madi down for bed around 9:30. I texted David and he was worried because he had to work from home Friday but my mom, who was going to help, got sick and could no longer help, and his mom had a doctor's appointment. I start thinking of who I can ask for help. My sister-in-law was happy to help, but David would have to bring Conner over there, which is hard because he can't leave during work time and waking Conner at 5:30 to get him there would not work either. Then, I think of my friend Mary, because I knew her daughter did not have school on Friday. Mary was happy to help (thank you Mary!!!) so I tell David and get that settled. I get ready and have a hard time falling asleep, so it's probably around 11:30 when I go to bed. I get 4 nice solid hours of sleep, then Madi wakes up wanting to be nursed. She's very fussy, though, and fidgety and unhappy. She crawls on my chest and.... throws up all over me. I tried to get her comfortable but my poor baby was miserable. I finally put her up on my shoulder and walk around, which does the trick. I tried getting back in bed and it didn't go over well, so I prop myself up in a chair and fall back asleep for about an hour and a half. Madi wakes up unhappy and fidgety again, and proceeds to puke all over me, again, covering my shirt. I clean up the best I can and from then until 7:30 when we had to get up to go to Shriners, try to keep her comfortable and asleep. The time comes to get ready and Madi was not letting go of me, so I attempt a shower but was only able to soap about one arm or so. I get us both ready, put her in the Ergo, and go down to the continental breakfast, which consisted of fruit loops and the ingredients for peanutbutter and jelly. I make myself a sandwich, get some coffee, and proceed spill it all over myself. I attempt to clean up then had to rush in to the Shriners van because they were there early. We get to Shriners at around 8:40 to check in and and wait. Then we wait some more. When we were done waiting, we waited a little longer. Around 10:45 am, they took us in. The doctor asks why we are there, and I explain it all to her. Basically, we now have financial help but did not used to, so before we found out we were looking for something to help cover some of the "bigger" stuff. We also wanted another opinion and other options for how best to care for her. After we found out Madi made in on Arizona Long-Term care, I contemplated canceling the appointment to Shriners, but after talking with Madi's physical therapist I decided not to. Another opinion is always good, and you never know when long-term care will end and you WILL need them to help. She tells me that she reviewed Madi's records and she seems to be well taken care of and that the only other thing they would recommend is possibly some surgeries to help with her bladder. I prefer Dr. Zuniga's theory of waiting a bit, though, to see how things progress, so she tells me she will put our application in 'pending' and if anything changes, I can e-mail her and she will approve our application. I was a bit disappointed to feel that I wasted all of our time and money, but it was nice to hear that Madi is getting really good care, that there is really nothing else they would recommend, and that they are there if we need them. We eat lunch and head back to the Ronald McDonald house. Madi had done fine during the appointment, but still wasn't herself and needed to sleep. I get back and call Carlos in transportation to see what time I should have a cab come. Turns out I was supposed to leave with a cab voucher and I didn't, so he sends the drivers back with the voucher. In the meantime, I clean our room and wash our sheets and towels, which is what is expected of you when you stay at the house. After I sign the taxi voucher, we go up for a nap. Madi falls asleep right around 1pm, and I layed there for quite a while, finally falling asleep around 2:30. At 3:15 I am awaken to a voice on a loud speaker telling me that there is a fire and to evacuate immediately. I didn't' see smoke, but did not want to mess around, so I get Madi up and out of the room, only to find out it was in the other building and I did not need to leave. Sigh. Madi would not go back to sleep so we walked around and played until we had to leave at 5. We sign out and wait for the cab, but we do not see it anywhere. I call the front desk, and in the corner of a video screen, they see it waiting somewhere down the street a bit, in the front, no in the back where they are supposed to go. They rush out to tell him not to leave and I lug Madi, our luggage, and the carseat to the cab. I don't even have Madi buckled in yet, and he was already 1/2 way down the block swerving like a maniac. He drove so fast, I actually got car sick, which rarely happens. We get to the airport in plenty of time and I return their car seat. They had sent mine back to Phoenix so I wouldn't have to worry about checking it in, which was awesome. They also gave me a $50 travel voucher, which was unexpected but very much appreciated. We get inside and I call a friend. While I'm talking I miss a call, so I listen to my voicemail. It was Southwest informing me my flight was delayed by about an hour. We were supposed to leave at 7:20 and now we would be leaving at 8:10. I was so tired and frustrated I just want to start crying, but obviously that would solve nothing, so I call David and tell him. We decide that he will put Conner to bed and stay home, and my parents will come get me. Then my phone battery dies. Ugh. $12 and one soggy sandwich later, a voice comes on the loudspeaker to inform us that our flight was now to leave at 8:00, woo hoo! I ask some random guy if I can borrow his phone and call my dad to give him an update. We board the plane and leave a little behind the new schedule, but not too bad. We end up with another nice guy sitting next to us and before long, both he and Madi were asleep. We get in Phoenix and I borrow his phone to tell my dad we landed. We get off the plane and go to get the carseat, but they cannot find it. Come to find out, it was still listed under that other person's name. We get the carseat, find my parents, and Make it home around 10:00pm. I have never been so happy to be home! I had to get Madi straight to bed. Everyone else was already asleep. I check my e-mail then melt in to bed and can finally relax. The whole trip was one thing after another, but God brought us home safely, and nothing else matters now. I wake up to Conner's sweet little voice telling me he missed me all was right in the world again.

Thursday, May 20, 2010

Off to Shriners!

Madi stamping paper.... well, she was supposed to be stamping paper...

Today Madi and I are off to Shriners in LA for an evaluation.  We are leaving for the airport in about an hour, will be staying at the Ronald McDonald house in LA, and will be returning tomorrow night.  We would appreciate prayers for a safe journey and will update when we get home.  Thanks!

Wednesday, May 19, 2010

Looking for ideas (again :))

I would really, really love to buy or build a handicap accessible playground for Madi in our backyard. She will be getting her wheelchair soon, and I would love to get a structure she and Conner can play on together, as well as the kids we have over for playdates and such. I think it will be amazing for her social and emotional development, and just help her feel that she can participate and be part of the "crowd". Plus, since we are going to homeschool the kiddos, it will really be her only access to something, unless we drive to a public park, which is doable sometimes, but not on a daily basis. Sounds like a great plan, right? Well, it would be, if we had about $25,000 (and many are more money!!) to purchase one, and get the soft matting she needs for under the playground so that she can wheel or walk on it. I've been looking and looking for grants, but because it is not a community project, meaning the whole community won't use it, I am coming up short. My dad is a general contractor and can build one, but I haven't been successful in finding plans either. So... I am looking for ideas. Do you know of a grant we can apply for? Do you have an idea for fundraising? Do you know how to find plans for one? Do you have  the name of someone who can build it for less?  If you have any information at all that we can use, PLEASE let us know! Thank you!

Tuesday, May 4, 2010

Ok, here's her walking video :)

Blogger is giving me errors when I try to upload her walking video, and now it's not letting me edit my previous post, so I'm just going to put her video here :)

Go Madi Go!

I just had to share my amazing little girl with you!  Here is a video of Madi riding her NEW Amtryke.  She LOVES it!  When I showed it to her and told her it was hers, she got very excited and shouted, "Mine, mine, mine!".  It was really cute.  As you can see in the video below, Madi petals the handlebars with her hands to propell the tricycle.  I can also push to help her.  She cannot push with her legs, but we got her one where her legs move also when she petals with her hands.  She has a leg strap to help keep her knees/legs in, and the foot petals have straps to hold her feet in.  The movement of her legs helps with her bone development, circulation, and all of that good stuff, even though she's not 'pushing'.  She still needs some help to make herself go, but she is learning very quickly.  She is doing so awesome!


And speaking of how Madi gets around, here she is in her stander/parapodium with her walker.  We are teaching her to use her walker to get around.  Eventually she will get RGO's (reciprocating gate orthotic- pardon my spelling on that) to "walk" but this is getting her ready.  

P.S.  Sorry for the crummy videos. I can't find my camera and had to use my dumb camera phone.