Prayers for Addie Goose
Her parents are with her and doing all that they can while dealing with so much fear and anxiety. They said: "Watching her go through this is a parents' worst fear, a fear that can be overwhelming and heartbreaking. BUT...What we do know is that we have an amazing daughter. She is a fighter. She is strong, fiesty, determined, smart, beautiful, and very very special. We have seen glimpses of that special Goose when she's fiestily tried to rip out her trach or when she wiggled her pretty pink toe nails that match mommy's. We do know that there is a plan for her and that Heavenly Father loves her even more than we do. We'll continue to pray that with His help, she will find the courage and strength to battle back. Keep praying for her. She needs every one!!"
This amazing family needs our help. Addie is the oldest of three and is only 5 years old. This accident is devastating, and the last thing this family needs is to worry about how to pay for it all. We will post updates as we get them, you can also see them on the facebook page "Prayers for Addie Goose."
Please donate and share this with your friends and family. Thank you for your prayers, love, concern, and anything you can give to aid this family in their time of need.
This money is going to her parents Jonathan Randall and Alyssa Randall to help with her hospital bills and road to recovery.
Goodness. I can't believe it's been so long since I last updated! So sorry! This last week was so busy learning our new life of commuting to Downtown Phoenix Children's Hospital. It was also an awesome week!
On Monday, Addie had her last OT appointment. They gave us some activities to do to continue reinforcing her fine motor skills, but again, overall, Addie has very little to work on in the OT area. In our PT appointment that day, we got a surprise. Her therapist said that after all of her physical tests the week before, her scores came back in the average or above average area as well!!! And they recommended discharge from PT! I was blown away! I was so thrilled and also kind of nervous! Being discharged meant that we wouldn't be getting as frequent of follow-ups on her physical well being and that her care and progress would mostly depend on us and our observations. It's like when you have a baby and you've only had that baby for like 2 days and the hospital just discharges you. And you think, "What?! You're just going to let us go home with this baby?! I don't even know what to do?! What if X, Y, and Z happen?!" But other than our nerves, we feel beyond blessed that Addie is progressing so incredibly well. Her PT emphasized again that she had never seen anyone like Addie. We have also learned that from now on her limitations will only be determined by the danger to her brain. This will be decided by her PMR doctor, Dr. Wilner. Our next appointment with her will be in early April. By then, the swelling in her brain will have decreased almost all the way and hopefully we'll be able to talk about lifting a few of the limitations. We shall see!
This week in swallow therapy she also made great progress. After a week at 7 ounces per honey packet in therapy, she's allowed to come home on it. And next week she'll begin testing out the next level down which is nectar thickness. We're happy for her progress even though it will be slow and steady for the next six weeks! A few small things to celebrate are that she was approved to eat suckers and any kind of candy. This makes our goose a very happy little girl.
She also had a speech language follow-up and she did great on the tests! I love watching the surprise on our therapists' faces as they test Addie. She's such a smart cookie. Previously when they had tested her, they had some concerns about her memory and retention. After the test on Thursday, her therapist, Lauren, was no longer worried. But this coming Tuesday will be our follow up with our neuropsych evaluator. This is the big marker of what cognitive issues Addie might face. We are super anxious for this discussion with our neuropsychologist, Dr Freeman. If Dr. Freeman recommends any interventions, we will go from there with school interventions or continued speech/language therapy.
Addie also visited with an opthamologist to double-check that there wasn't any other hidden damage to her eyesight. Great news: her eyes and optic nerve look perfectly healthy! The only thing is that she needs a more intense prescription then she previously had. So we get to go glasses shopping again!
As for life at home, we continue to struggle to find a balance between keeping her safe and letting her be Addie. We've experienced an unprecedented amount of eye rolling as we continue to say "no, slow down, stop!". This girl is feisty and sassy and we love her! Despite the eye rolls, we have had fewer emotional breakdowns this week. Her only one came when a scheduling conflict with her eye appt caused her to miss her school's read-a-thon. She was so upset, especially because she had dressed as Pinkalicious and was so excited to share her favorite book with her friends. She cried all the way home and for a good while after. Thankfully, she has been blessed with an incredible teacher, and she has promised a mini read-a-thon to help Addie feel less left out. We've also been finding ways to adapt to things that she can't do. We made thickened popsicles this week and Addie and I went on a shopping date while Dad and the boys went to a bounce house work party.
We're also trying to figure out our support system. Who do we call when something goes wrong? When do we call a doctor? What sorts of things should we be on the lookout for? Addie had her first fever since being discharged and Jon and I both kind of freaked out. She also had started complaining about pain in her neck that day, and so we began panicking about meningitis. Thankfully, after one too many google searches, we were reminded that one of the NPs on Addie's case lives right near us and she was able to come visit Addie super late that evening (thank you, thank you, thank you Sherrily!!). She was fine and we were able to breathe much easier.
Tomorrow, we have a follow up with Addie's neurosurgeon from Maricopa Hospital. We are excited to see him and show him Addie's progress. Last time he saw her, she was barely saying a few words and hadn't been able to even walk on her own. We are also grateful to have a chance to thank this man for helping to save her life. And Addie has specifically requested to go see her nurses at Maricopa. We're excited to blow them all away with our miracle!
I have also been hit this week with how much of an impact Addie has made on the lives of people who have followed her journey. I have met several people this week who were strangers and as soon as they knew who we were, they embraced us like close friends, shed tears, and thanked us for allowing them to be part of her story. While this trial has been difficult and terrible and I would never wish it on Addie, I am also grateful for the way that her story and her spirit have allowed others to be touched by the miracles of God.
Today was our second to last day at PCH and things are just awesome. Addie did fabulous at swallow therapy and they think she may be ready for 3/4 honey thickness on all liquids. Another tiny successful step forward. We had to say goodbye to our speech therapist, Miranda, today. I loved how good she was Addie, both with listening to her and with motivating her. I also feel like we became good friends and I'm super sad that she can't be our outpatient therapist too.
Addie also finished her neuropsych testing today. We'll review the results with the Dr in two weeks and no, she can't give me any idea which way things are leaning (yes, I asked), lol. When I came in at the end of the test, Dr Freeman looked up at me with this astonished look and held up a mini glider plane and said, "Um, she just built this with no instructions. I have ten year olds who can't do this!" Lol, they're doing a good job of boosting up my mom pride these days. She's not only a miracle, but a smart one too.
We also said goodbye to our school teacher, Mrs. Horton. Addie just loved school here and I know she's anxious to get back to her real school!
Addie didn't have OT or PT today because we got to go to the Phoenix Children's Museum for a couple hours. It was a blast. It felt like Addie was just a normal kid again, not one with a traumatic brain injury. She was very careful and smart with her body and her new limits, but she also pushed some boundaries and I was so impressed with how well she did. She acted just like she would have a couple months ago with less running and jumping but just as much eagerness to explore. In the center of this museum there is a giant climbing structure three stories tall. From the beginning, I said no way. But she was doing so great and had mastered everything else, so we did it and she climbed to the top of the three stories with no problems whatsoever (whereas my glutes are already sore from the climbing and bending we did). AND...she didn't limp all afternoon. She was wearing some different boots and we think that provided some extra support and cushion. She exclaimed a couple times, "Mom! My foot doesn't hurt!" I do have videos to post but they won't load while I'm in the hospital so I'll post them tomorrow!
But most importantly, tonight is the last night we have to sleep in a hospital separated from the rest of our family. Tomorrow is the day!!!!!!!
Awesome day today!! Addie is doing awesome with the swallow therapy and is graduating to milk on 3/4 honey thickness tomorrow instead of full honey. A week ago, she would have aspirated that! And today, Addie told her teacher, "My favorite therapy is swallow because it helps me get healthy." It's her only therapy with pain but I love her perspective that swallow is the best because it is helping her get better in the most important way right now. She seems to understand so well that her therapies are good and that they have a purpose. Never a complaining word from this girl. She sets such a good example of optimism. She also hasn't even seemed discouraged or frustrated with the new struggles she faces. She just takes it in stride, talking about getting better. I feel like Heavenly Father has just blessed her with an understanding of what happened and an understanding of her new mission right now: to get better. Seriously, never a complaint. I'm so impressed... Couldn't love her more.
She also did 2 straight hours of neuropsych testing. That's a long time! I couldn't be in the room for it, but Dr Freeman said she did great and loved all the activities they did. As Dr Freeman left, she walked over to the other nurses and whispered, "I just love her!! She is adorable!!" Lol, so I think Addie did okay, at least with participating and being cute. Tomorrow they'll finish the last hour of the test and then we wait for the results. Oh the waiting.
Addie also had her left ankle xrayed. It has continued to hurt, and the pain has been in a consistent place the last several days causing limping after just a few steps. They've been trying to find a source of the pain but have been unsuccessful. Today, after the PT and I spent a half hour watching Addie walk and testing and testing and testing and eliminating sources of pain, it's been determined that she most likely has/had a fracture.They also used a tuning fork which sends vibrations through the bones and the vibrations can cause pain in fractures. They used the tuning fork all over Addie's other bones with no reactions, but in her left inner ankle bone, she immediately said it hurt. So, she got an xray this afternoon which may show the fracture, but it's been so long since the accident it may have healed enough to not show up. Both the PT and Addie's inpatient rehab nurse practitioner believes this to be the source of the pain. Hopefully knowing this will help us get Addie walking pain free asap!
Tomorrow is an exciting day! She gets to go on an outing to the Children's Museum! We're going with a couple other kids from the hospital and I'm very interested to see how Addie adjusts to all the chaos there. It will be a good test! Wish us luck!! Goodnight!!
Monday: back to the therapy grind!. Today was a good day. We got a lot of answers and made some big decisions. First, Addie's hips look great! They said there were no breaks or anything to be concerned about. So now we just strengthen, strengthen, strengthen! Her regular PT hadn't seen her since Friday and she couldn't believe the progress she's made! Addie got to play a Wii game in PT today that worked on her balance. She loved it! She also got to shoot rockets using her foot to stomp an air bellows to launch them into the air. I love all these creative ways to get her to balance and work on her leg strength. Our PT (Crystal) also talked about early discharge and that she would be recommending it at our rounds meeting tomorrow morning. We're super interested to hear what everyone has to say tomorrow!
Addie also got her stitches out today! For some reason I view this as very symbolic. The stitches were the last piece of medical equipment on Addie's body and I love knowing that from here on out it's just her. She also had her throat scope done today. I'm sure we'll get more information in rounds tomorrow, but what the doctor told us as he finished is that everything looks really healthy. He was able to watch her swallow and he said things looked great and he even suggested testing her on the next thinnest liquid. That's great news! So glad to know that there doesn't seem to be any significant damage to the vocal cords or swallow area. I'm sure he'll take some time to look at the images he took a little closer, so we'll know more tomorrow.
Addie has also started becoming more restless at night. We've had to use melatonin the last two nights to help her fall asleep but she has been waking up several times through the night saying she can't sleep. We'll be looking into other options tonight to maybe help her get a more restful night's sleep. She's been looking fairly exhausted by about 5 o'clock these days.
One other thing we've noticed as Addie becomes stronger and less medicated, more small issues continue to show up. Things that were previously masked by her weakness or by the medications are now more visible. Today her OT and I noticed that her left eye was really struggling to follow images. She then did a vision test and we determined that her vision prescription is still correct. She's still able to see very small writing from far distances with her glasses in both eyes. However, when she's asked to track a moving object with her left eye, she loses it very easily. The good news is that she hasn't lost any eyesight, we just need to retrain her left eye muscles! And now that we know that this problem exists, OT will be adding eye strengthening exercises to every session.
We also committed to do PCH therapy through the hospital for the foreseeable future. We're still looking into options for Addie's swallow therapy. We're hoping that if we can find something closer to home, then we can move her OT and PT to the PCH East Valley. But for now, Jon and I feel good about going forward with all her therapies at the PCH hospital. This is certainly not convenient in any way, but I feel like having that consistency and being able to do all her therapies in one place will allow us to simplify our lives a little bit. Again, that might change as we get time to do more research, but at least we have a plan moving forward.
As I mentioned earlier, tomorrow is rounds. I love rounds. I'm excited to hear what they have to say tomorrow! Pictures are of Addie cuddling with me just before they removed her stitches. And she really wanted to take a picture of the giraffe she built!
I'm so glad to hear she is improving. Thanks for keeping us all updated. We send our love Ramirez famiky (aka Andrew low's sister) ❤❤❤❤
Prayers continue ❣
We are so sorry. Lot of Prayers from Salt Lake City friends.
Brodie told us last night of your little girl. We are praying. So sorry.
Sending prayers for this sweet little girl and to the entire family.