Natalia has spent the past several weeks virtually chained to her favorite spot on the couch. She did not want to move from this spot and just watched the world go on around her. While her little body trapped her in place her mind was free to travel...and so she did. She quickly grew tired of watching cartoons so she searched for something new to watch...the Travel Channel. She could not only watch one of her very favorite shows (Anthony Bourdain...No Reservations) but she could venture off to different places. She spent the week before her shunt surgery talking of nothing but Hawaii so as we see more and more improvement we are making it our goal to get there for April...it will mark the 1 year anniversary of her diagnosis. She was originally given 6mos-1yr and we are going to kick that one in the teeth by celebrating life.
I ask any of you who has been to the islands for advice. Just click on the comment note below the blog and leave your thoughts. We'd love to hear from you...that doesn't just mean about Hawaii, if you just want to say hi that's great I read them all to the girls.
Improvements...to understand how far she has come you need to realize how limited she had become. She would go from the bed to the couch and no where else. She was frightened to move even the slightest bit. Every move would make her think she was going to fall. She tremors were getting bad again and there was no hope of getting her to recognize when she had to go peepee. But even during this dark time her mind has been at its sharpest. Her body would just not cooperate. She is practicing her standing without holding on...she is up to 25 seconds, she is doing leg and arm lifts for exercise. She starting to walk with a little more confidence, so instead of having to wrap our arms around her to get her to walk she will now just hold your arm while slowly moving. She is reaching for things and stretching while sitting. She is on the road back. What we see now is miles from where she was before the shunt.
Love to you all and thank you soooo veryyyy much for your prayers,
Roni
8 comments:
Girls, your halloween costumes were adorable!! Looks like you had a had a fun night. Glad to see the shunt is working and helping Natalia get her strength back. Kids have a unique ability to fight battles most adults would have given up on. I think about you guys often and am always checking this blog for updates..and of course to see the newest pose "Paparazzi Pia" is striking...LOL. Hawaii is a great destination! Although I haven't been there in 27 years, I'm sure one thing hasn't changed a bit....Poi is HORRIBLE!! Keep us posted on when your plane leaves...Lori and I would love to come to the airport and see your family off on another great adventure.
;-) Shelley/Make-A-Wish
Hey Guys,
I haven't sent cards in a while and thought I would say hello! I have to tell on myself,I just figured out that I could post comments on the blog! Duh! Anyhow,
We miss you all at church. You are always in our thoughts and prayers!
God Bless Always!
Sincerely,
The Goodwin Family
Hi Valle Family, Its so good to hear Natalia's surgery went well. I have to tell you Roni I laughed when I read your blog on sophia's BAD Day. I can't tell you how many mornings I have gone through the same thing with my youngest. I pray it gets better otherwise I will be bald from pulling out my hair!!! April misses Natalia so much. She prays for her each night. You are all always in my thoughts and prayers. Take care and please get give Natalia a hug from us.
Lots of Love,
Christi & April Steinhauer
Shelly is right - The POI sucks!!!! Anyway...... I loved a hawaiian luah.. (sp?) I so know that isn't spelled right..... I know walk a mile in someone elses shoes...... right now my right foot hurts from new combat boots and and waling/runningin combat boots at the Veterans Parade in Fresnotoday....... OOOOWWWWWWWWWWW!! Talk to you soon...... Shirley Stine
Queridos Gallo y Roni, Es una lastima que de pronto dejemos pasar tanto tiempo, hasta ahora no me habia dado cuenta del tiempo que ha pasado desde que oimos la noticia acerca de Natalia. No pasa un dia en que no piense en ustedes pero aun asi es increible que no haya podido hacerles patente mi carino, mi apoyo y solidaridad. Son en realidad increibles, ustedes 4 por la batalla que libran cada dia por la vida, por su determinacion y por su amor. Nunca duden que todo eso sera recompensado.
Les mando todo mi amor.
My parents, Gordon and I went to the Big Island last year and had a blast. We stayed on the Kona side (dry side, and a little more geared for tourists). There is GREAT snorkeling (we saw sea turtles!), and I know there are glass bottom boat tours since snorkeling probably isn't an option. The volcano is really interesting, although we couldn't really see the lava. On the Hilo side (wet side) there is an absolutely gorgeous botanical garden. One warning - it takes a long time to get from one side of the island to the other (no high speed highways out there).
Hi everyone- Hawaii was so much fun for our family. Sarah loved the beaches with the warm water, especially one section in Oahu with a barrier out a little way to stop the waves. The flame throwers and luau dancers were always fun. You can pay for a show or see them for free at most shopping areas. We also really enjoyed parasailing. You can stand on the boat and they lift you right up. I can picture you there already!
Janna Condon
hi guys. Well i have been to the islands a few times while working on the cruise ships and there are so many things you can do there. There are waterfalls to see, volcano's to see.... if you want to see the lava and can manage a helicopter ride then that is the only way to see the lava flowing... it is an awesome trip if you can take it. Blue Hawaii helicopter tours you can take from either hilo or Kona.. check out there website and pray for a sunny day. There are garden centers and botanical gardens where you can find the stunning orchids, markets to visit with local fresh produce. I found a great idea to hire a car while i was there to get around. It does take time to drive around but if you have a hire car it is much easier and you can take it at your own pace. There are plenty of places to stop and have a picnic but the sun sets and sun rises are the best in the world. If you want I can send you some pictures to your e-mail. Let me know. Love to you all with all my prayers every day. Love Wendy Dando
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