Graciana is a 2-year-old with autism who lives in El Salvador. She cannot talk due to her autism and needs intensive therapy for speech as well as behavioral therapy.
In addition, she has just been diagnosed with Spina Bifida which makes it very painful for her to stand and impossible for her to walk. She will be needing occupational therapy as well as physical therapy to see if it will be possible for her to walk one day.
Healthcare in El Salvador is very different from the United States. The family is so thankful to have found facilities to help Graciana, however, they are not able to get insurance there. They will have to pay out of pocket for her daily therapy sessions and frequent doctor's appointments, as well as pay for childcare for their four other children while they bring Graciana. As you can imagine this will be very costly, so any donations would be a huge blessing to the family!
We know that God has a special plan for Graciana's life and we can't wait to see how He will work in this situation. No matter what the doctors say, we know that God will have the final say as to whether she will ever be able to walk or talk, and we appreciate all prayers said on her behalf!
Update #9 September 20, 2022
For almost 3 months we have been doing scans, paperwork, phone calls, translations, emails, and praying, to try to get Graciana to see a Neurosurgeon out of our state who specializes in children with Spina Bifida. We were told even after all that approval from our insurance was very unlikely. You may have seen last week I even posted a prayer request about it...well you guys must have been praying hard for us because we got a call today that it was approved! Even the lady at the doctor's office was surprised! There is a good chance that Graciana will need spinal surgery in the coming months, which is a little scary, but we are relieved to know that she is seeing a surgeon who is an expert in this field. No matter what, we know it's ultimately all in God's hands, which is the best place to be!
Update #8 September 15, 2022
I cannot believe it's been SO long since I have shared an update! The last few months have been a bit of a blur. Graciana stopped her therapy in El Salvador in mid-July because we were supposed to head to the U.S. but then we all got Covid and plans changed. We had to reschedule appointments we had set up in the states and postpone our trip. When we were over Covid we contacted Graciana's therapist, to try to get her back into therapy for a few months, and they had already given up her spot, and couldn't fit her in. That being said, she has been out of therapy for about 8 weeks now, and it has been ROUGH! She had been making so much progress and now she has begun to backslide. Her sensory issues are through the roof, she has been really uncomfortable and is an anxious mess. If anything good has come from this experience it's that we have seen the tremendous difference that her therapy was making. We are finally going to the U.S. next week and we are eager to get her all set up with therapy over there! Follow us on Instagram for more updates!
Update #7 July 14, 2022
It's been a rough week over here.
Our whole family had COVID for a second time, which means Graciana has had no therapy for the last week. Skipping therapy has really confirmed that all of her therapy actually helps her in several ways.
She hasn't wanted to "walk" with us holding her hands, which makes me think she feels like her legs are a little weaker without going to PT. She also has more difficulty sleeping when she hasn't gone to therapy. I think it's a mix of being less tired at night, and also her being less regulated with her sensory issues.
This means she wakes up screaming with night terrors more often. It's hard to explain what it's like, but her eyes are open and she looks awake but is still asleep like someone who is sleep-walking would be. We were told it's not good to wake her in that state, so we try to just hold her and calm her down, but it can be really challenging when she's resisting this and fighting us the whole time.
The other night was especially bad. As I was trying to hold her she threw her head back (which is something she does when she's really upset) to "fight me off" her and she hit me so hard she broke my nose. This is the second time my nose has been broken by one of my kids, so I am hoping that when it heals maybe she will have knocked it back into place...I doubt it though! LOL.
We are getting a little better, so hopefully, she can go back to therapy soon, and that will help her regulate and sleep better! Thanks to all who have prayed for us to get better!
Update #6 July 2, 2022
We go to therapy day after day, week after week, and sometimes we begin to question if it's all actually "working." Then we have a week like this week and it's all the confirmation we need that it's paying off!
Graciana doesn't talk yet, and she can't point or sign things yet either, so it can be really hard to understand what she wants or needs. Typically she just whines or cries until we guess the "right thing." Well, a few times this week when she wanted a drink, instead of whining, she found an empty cup and brought it to us to let us know she was thirsty.
Another thing we've been working on is showing her food or giving her a small piece and asking her do you want to eat this?" This week I did that, and instead of just throwing food she didn't want on the floor, she shook her head "no." This was exciting because shaking her head sí or no is something they have been working on in therapy. It was exciting to see her use something she has been learning!
As small as these changes may be, it's made a huge difference already in helping us understand what she wants. We are happy with the progress she is making and we look forward to watching her continue to improve!
Graciana has been doing very well with her therapy. She actually seems to enjoy most of it! She's still not a fan of the PT, but we can see that it is making a difference. She enjoys playing on the floor most of the day, when before she didn't even feel strong enough to. Now she crawls and scoots all over the place, and has gotten pretty good at sliding in and out of the hammock! Her night terrors have been much better over the last 2 weeks, so we really appreciate all who have prayed for her!
Update #4 May 31, 2022
Last week was another really good week for Graci. She didn't cry at all during therapy, not even PT which is usually the one she hates the most. She is really bonding with her OT/Speech therapist which has been a huge blessing.
At one point last week I waved at Gracita and she waved back a little which is not something she has ever done before so that was encouraging. I have also been trying to teach her to say "hi" and she repeated it back to me twice! It's crazy how little things like that mean so much that they can make you tear up!
Again, thank you to everyone who has prayed for Graciana and/or donated. Words cannot express how much it means. Seeing how much therapy is helping her makes us so grateful to have the money to continue to send her and get her the help she needs.
Update #3 May 21, 2022
This week Gracita:
-Cried when she had to LEAVE her Sensory/OT session! She is really starting to like going and is finally ok being alone with her therapist, Ester, while Adan or I wait in the waiting room!
-Stood up without holding on for a quick second, which is something she has never even tried to do before, so we are thankful to see that her PT is helping and making her legs a little stronger.
-Started saying "waba" again which is what she used to say when she wanted her bottle when she was younger. She had dropped that word a few months ago but began using it again this week when she wanted her cup, which was encouraging because it makes me feel like her Speech therapy may be helping her. She still has a LONG way to go, because the only other word she says is "dada" but hey I'm just gonna tell myself she doubled her vocabulary this week! LOL!
We are really happy to see that all her hard work this month is really paying off! Thank you to all who have donated to make it possible for her to continue to get the help she needs!
Update #2 May 16, 2022
Last week went a little bit better for Graciana. She still screamed every time she went to therapy, but the crying didn't last the entire time as it did in the past, so we're making progress! We did a lot of pool time this week, which she absolutely loves! We try to bring her to the pool when she has an especially difficult day, and it always helps to calm her down. We are hoping this week will be even smoother for her!
Update April 30, 2022
This week was challenging. Gracita started all her therapy, and some days were better than others.
She goes 3 days a week to one place for speech, sensory therapy, and occupational therapy. Most of the things they did with her there were pretty fun and she was ok doing them as long as one of us was in the room. Hopefully next week we will be able to get her comfortable enough to do her therapy without having us in the same room.
2 days a week she does physical therapy and electrotherapy. She did NOT enjoy these at all! The physical therapy is a little painful for her using muscles she isn't used to using and she basically cried the whole time. She has very low muscle tone, so the physical therapist wants to build up her muscles, then in a few months, she will get fitted for AFOs (braces) which will hopefully help her walk. She will need them for both legs, but her left leg/foot specifically needs the brace to hold it straight. You can see in the picture her foot turns in a lot, especially when she tries to walk.
Tonight we were able to bring her to the pool. Kicking in the pool is one of her favorite things to do, and it's actually really good for her leg muscles and calms her down when she's overstimulated like she was this week. It was good to see her so happy after such a rough week!
Please pray for Graciana today as she goes for an MRI of her spine. This will let her Drs determine the best way they can help her and if she needs surgery. We will post a full update tomorrow.