Small Steps For Gracita

Gracita has been busy lately!

Monday through Friday she has therapy in the morning and school in the afternoon, so she has a full schedule. She has been working so hard, and it's been going really well. 

Although she is still completely nonverbal, she is learning new ways to try to communicate with us. This has been extremely helpful for us, but also for her moods, because so much of her frustration comes from us not knowing what she wants or needs. 

She has made great strides (pun intended) with her physical therapy. The therapist she is working with has a lot of experience with children on the autism spectrum, so it's been a very good fit for Gracita. She has been great at addressing some of Gracita's sensory issues that are impacting her wanting to use her gait trainer and AFO braces.

We are so thankful that Gracita is doing so well. It's a lot of running back and forth across town for her papi, Adan, but he doesn't complain, he's just thankful that we have found places here to help her! 

Thank you for your prayers and support. We really appreciate both!

Today Gracita started Pre-K at a special school for kids who need help with speech and other developmental delays.

Living in El Salvador there were not many options of preschools like this for her, so we are thankful to have found this school.

She will attend this program for a few months, then after she turns 4 she will be able to move to a national school for children with disabilities. It should be a good fit for her there because they help children who have neurological disabilities as well as physical disabilities. (She has both.)

We are a little concerned with how she will do getting around at the preschool, but they are aware that she has limited mobility and said it shouldn't be a problem since they spend most of the day in one room. 

We are anxious to see how she does and will be sure to post an update in the future! 

I cannot believe it's been so long since I have posted an update! It's not because we haven't had anything to share. It's actually the opposite, we have had SO much going on that I have not found the time to write anything for a long time! 

We have been in the U.S. for about 8 months now. Graciana has had tons of therapy and seen several doctors over the past months. She started to take a few steps with a walker a few months ago, then we got the AFO braces that we have been waiting for and she has really taken off with them! We are hopeful that one day she will be able to walk well without them, but it could be several years because of an issue she has with her hip that makes her leg turn in. She is doing pretty well with her Speech, ABA, and Occupational therapies too, however, the progress there has been slower. 

We are looking forward to heading back to El Salvador in a month, so our family will finally be reunited after such a long time. We have found a good Physical Therapist there who Gracita will see several times a week, as well as going to a center where she will do Speech and Occupational therapies. 

Moving forward will bring many changes for Gracita which we know will be difficult for her, and expensive for us, so we really appreciate all who have kept us in prayer and/or supported us financially.

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!

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!

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!

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!

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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! 

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.

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!

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!