June 10
In support of
Addison Stavar
View Support Registry
Addison Stavar
It finally feels like we have some predictability. We are in the process of switching to Functional Formularies from Kate Farms food. Functional Formularies is a whole food source, and some of the testimonies from moms are INCREDIBLE. Her body seems to be doing much better with this food, and my mama heart feels so much better knowing she is getting some real food sources and some acerloa! (iykyk) I am praying that this change will sustain us and we won't have to figure this out again. Shout out to an old friend Suchi for letting me know about this option and shout out to way too many people offering to drive all over TX to find this for me!!! I am still unsure if we have enough. I was given a rep's contact, and she sent me a sample, but the sample was smaller than a normal sample so she sent me 10 last week and another 12 are supposed to be arriving this week (I don't know when). And someone found another site that could get them to me Thursday, so I bought some from that site after purchasing from the manufacturers site for an extra $300 to expedite shipping for FRIDAY. Oh man. Another mama, who I haven't even met dropped off some Juice plus stuff for us at the house yesterday, so I am thinking we will use that to bridge the gap if we have some time between our current stash and our next one. Last night, I was like man I just feel like I have a colony of ants working on our behalf and it is EFFING incredible to be a part of and witness. You all are seriously amazing. Old friends, old roommates, acquaintances, people I've never met, all of you - truly unbelievable.
Addison had a hard night two nights ago, and I was at my wits end up with her from 1-3 just watching her so uncomfortable and not being able to do anything about it. We have an "agitation plan" for when she is uncomfortable. After checking "environmental things" - wet diapers, stimulation, etc. the first line of defense is Tylenol, second line is Propranolol and third line is Clonodine. I do not enjoy throwing Tylenol at every discomfort, but two nights ago, I finally relented and started walking through the agitation plan. I'm not confident the Tylenol helped, but she fell asleep before we got a dose of Propranolol, but I had that ready to go too. She is already being given both Propranolol and Clonodine daily, but we are told that throughout inpatient rehab, we will likely be consistently tweaking her dosage and her agitation plan as she "emerges".
Yesterday morning she was tired again, therapies weren't super productive.... etc etc I had a mom that doesn't know me reach out who was trying to be helpful but shared that her son was still non verbal after his accident 5 1/2 years later. She was sharing some resources that have been helpful, but I spiraled and got some space from the hospital yesterday afternoon. I cannot think about worst case anything nor can I think about that far down the line. By yesterday afternoon, she had gotten some rest and PT and OT were productive. Praise God.
Speech was productive this morning, AND she got a whole night sleep last night. Her and I Facetimed my brother earlier, and I asked her "Who is that?! Is that Uncle Richard?!, and she made an audible noise. I helped her hang up the phone. It sounded like the chuckled when we were watching a bird dive and catch little minnows in the healing garden yesterday. She gets daily laughs from Kyle when he does the chicken dance for her. Yesterday her and Andrew got to nap next to each other - I am hoping this helps sync her nervous system. She stood in her stander yesterday for 40 minutes. She is handling collar care and honestly all the care/meds so much better, starting to soothe herself eventually. She did drop some weight over the weekend, so we are working to keep her volume of food where it is - we've been dropping it because she hasn't been handling it well, but now we know that the volume really can't be decreased from where it's at. Enemeez are our friend right now if we don't get bowel movements, and she isn't uncomfortable with them and responds immediately. I am relieve to have something in place that guarantees bowel movements AND isn't uncomfortable for her. She still grinds her teeth but MUCH MUCH less. Our favorite nurse was back on Sunday, and she had been gone for 5 days, and she even commented on how much better she looks and how much less she is clenching. We are waiting to talk to neuro on how much longer she will have to wear her neck collar. I am SO ready for it to come off for her sake, but I've really seen that prioritizing milestones no matter how exciting should not and cannot be at the expense of stability. It's been a lesson I've been learning for a long time, and this experience has really let it sink in.
It is not the progress I want, and it's not the speed in which I want it, but so many people have vocalized to me what a difference they see. I see it too, but it's harder being in it and being there for all of the hard moments where she is uncomfortable, and I feel helpless. Honestly, it's not super encouraging for me to hear people reflect the progress, but I am relying on it as truth and a means to keep going and to refocus my perspective on what IS moving and changing and improving. Picture is of the kids yesterday napping next to each other.
We continue to be well fed and cared for by our parents who are now rotating in staying with us. Kyle and I are both getting away from the hospital - alternating days.
If you have recs for PT, OT, or ST outpatient, send them my way. My preference is in South Austin, but of course willing to drive if needed. Priority would be people who have experience with TBI and/or if you or someone you know directly has had experience with the provider.
I got connected with a Foundation called Team Luke Hope for Minds. Their mission is to enrich the lives of children with a brain injury and give hope to their families through support and education. They have a conference, coincidentally (likely not so) at the church where Addison attends Mother's Day Out during my birthday weekend this upcoming October. So for my 37th birthday, I will be attending that conference, and I can already tell it's going to be amazing.
Also, the day we got admitted to inpatient rehab, a guy I went to college with was walking in the hospital. He approached me and said he had been following our story and that his daughter was getting discharged from inpatient rehab that day and they had just experienced a similar journey just a few weeks ahead of ours (different incident). Her discharge was the reason we got into rehab. I share that, because there have been SO many unfoldings and happenings throughout this whole journey that are undeniably miraculous. Growth (personal and relational), managing difficult conversations, different perspectives, collaborating amongst differences for a greater good, trust when things aren't going my way, faith when I have no evidence to be faithful, coincidences, peace, our colony of ants working on our behalf in every which way, making friends with some of the nurses, enjoying Mueller when we get out of the hospital, time in prayer, reconnecting with old friends, shifted perspective on what is important, an opportunity to lean into being uncomfortable with being seen and speaking up as a mother. So much fruit.
Romans 8:28 And we know that God works all things together for the good of those who love Him, who are called according to His purpose.
Side note: This soup was dropped off for us this week, and holy sh*t it is so good. My friend said it makes a TON, so if you're ever needing to bring someone food or just are in a dinner rut, please eat this.
https://thedefineddish.com/marthas-pork-pozole-verde/
Addison had a hard night two nights ago, and I was at my wits end up with her from 1-3 just watching her so uncomfortable and not being able to do anything about it. We have an "agitation plan" for when she is uncomfortable. After checking "environmental things" - wet diapers, stimulation, etc. the first line of defense is Tylenol, second line is Propranolol and third line is Clonodine. I do not enjoy throwing Tylenol at every discomfort, but two nights ago, I finally relented and started walking through the agitation plan. I'm not confident the Tylenol helped, but she fell asleep before we got a dose of Propranolol, but I had that ready to go too. She is already being given both Propranolol and Clonodine daily, but we are told that throughout inpatient rehab, we will likely be consistently tweaking her dosage and her agitation plan as she "emerges".
Yesterday morning she was tired again, therapies weren't super productive.... etc etc I had a mom that doesn't know me reach out who was trying to be helpful but shared that her son was still non verbal after his accident 5 1/2 years later. She was sharing some resources that have been helpful, but I spiraled and got some space from the hospital yesterday afternoon. I cannot think about worst case anything nor can I think about that far down the line. By yesterday afternoon, she had gotten some rest and PT and OT were productive. Praise God.
Speech was productive this morning, AND she got a whole night sleep last night. Her and I Facetimed my brother earlier, and I asked her "Who is that?! Is that Uncle Richard?!, and she made an audible noise. I helped her hang up the phone. It sounded like the chuckled when we were watching a bird dive and catch little minnows in the healing garden yesterday. She gets daily laughs from Kyle when he does the chicken dance for her. Yesterday her and Andrew got to nap next to each other - I am hoping this helps sync her nervous system. She stood in her stander yesterday for 40 minutes. She is handling collar care and honestly all the care/meds so much better, starting to soothe herself eventually. She did drop some weight over the weekend, so we are working to keep her volume of food where it is - we've been dropping it because she hasn't been handling it well, but now we know that the volume really can't be decreased from where it's at. Enemeez are our friend right now if we don't get bowel movements, and she isn't uncomfortable with them and responds immediately. I am relieve to have something in place that guarantees bowel movements AND isn't uncomfortable for her. She still grinds her teeth but MUCH MUCH less. Our favorite nurse was back on Sunday, and she had been gone for 5 days, and she even commented on how much better she looks and how much less she is clenching. We are waiting to talk to neuro on how much longer she will have to wear her neck collar. I am SO ready for it to come off for her sake, but I've really seen that prioritizing milestones no matter how exciting should not and cannot be at the expense of stability. It's been a lesson I've been learning for a long time, and this experience has really let it sink in.
It is not the progress I want, and it's not the speed in which I want it, but so many people have vocalized to me what a difference they see. I see it too, but it's harder being in it and being there for all of the hard moments where she is uncomfortable, and I feel helpless. Honestly, it's not super encouraging for me to hear people reflect the progress, but I am relying on it as truth and a means to keep going and to refocus my perspective on what IS moving and changing and improving. Picture is of the kids yesterday napping next to each other.
We continue to be well fed and cared for by our parents who are now rotating in staying with us. Kyle and I are both getting away from the hospital - alternating days.
If you have recs for PT, OT, or ST outpatient, send them my way. My preference is in South Austin, but of course willing to drive if needed. Priority would be people who have experience with TBI and/or if you or someone you know directly has had experience with the provider.
I got connected with a Foundation called Team Luke Hope for Minds. Their mission is to enrich the lives of children with a brain injury and give hope to their families through support and education. They have a conference, coincidentally (likely not so) at the church where Addison attends Mother's Day Out during my birthday weekend this upcoming October. So for my 37th birthday, I will be attending that conference, and I can already tell it's going to be amazing.
Also, the day we got admitted to inpatient rehab, a guy I went to college with was walking in the hospital. He approached me and said he had been following our story and that his daughter was getting discharged from inpatient rehab that day and they had just experienced a similar journey just a few weeks ahead of ours (different incident). Her discharge was the reason we got into rehab. I share that, because there have been SO many unfoldings and happenings throughout this whole journey that are undeniably miraculous. Growth (personal and relational), managing difficult conversations, different perspectives, collaborating amongst differences for a greater good, trust when things aren't going my way, faith when I have no evidence to be faithful, coincidences, peace, our colony of ants working on our behalf in every which way, making friends with some of the nurses, enjoying Mueller when we get out of the hospital, time in prayer, reconnecting with old friends, shifted perspective on what is important, an opportunity to lean into being uncomfortable with being seen and speaking up as a mother. So much fruit.
Romans 8:28 And we know that God works all things together for the good of those who love Him, who are called according to His purpose.
Side note: This soup was dropped off for us this week, and holy sh*t it is so good. My friend said it makes a TON, so if you're ever needing to bring someone food or just are in a dinner rut, please eat this.
https://thedefineddish.com/marthas-pork-pozole-verde/
Comments
Morgan Mider
0107pdaa
Shane Danner
@bcrawforddc on IG
Cait Murphy
Carol Malone
God, our Almighty Physician, please heal Addison from all of her injuries. Cover Britney, Kyle, all the family, and her caregivers with peace and understanding as they make the proper decisions for her care. Amen! 🙏🏻🙏🏻🙏🏻💕💕🙏🏻🙏🏻🙏🏻