Day 78
Wednesday September 3rd
9:30 pm
Chase Update:
Day 43 at Craig hospital
Day 43 at Craig hospital
Chase rocked it in speech today. He was able to make N and L sounds so well today, as well as improving on his B & M's and make the H "sound" he loved having speech for a solid hour instead of two - thirty min sessions. I hope they do it again.
Chase had school for the first time today. It was mostly just the teacher geting a feel for where is at mentally and academically at this stage.
In PT he continues to strengthen his legs and improve his ability to walk. He is working on getting approval to take himself to class. He wants to be independent. It's so hard to be quiet and let him do it on his own.
Chase had school for the first time today. It was mostly just the teacher geting a feel for where is at mentally and academically at this stage.
In PT he continues to strengthen his legs and improve his ability to walk. He is working on getting approval to take himself to class. He wants to be independent. It's so hard to be quiet and let him do it on his own.
We went to a shopping center for an outing today. As Chase is waking up more he is less impressed with the pull on pants and t-shirt the hospital recommended I bring. Chase was a button up shirt, tie and sweater, fitted vest, and dress shoes wearing teenager. He loved clothes and dressing well before the accident. He found H&M today and apparently not much has changed. They had a ton of amazing $5&7 deals they just marked down today. I am exhausted. I hate shopping unless it's online, but he is so excited about his purchases. Phil will hate everything he got lol!
Its really great to see him caring about music and his appearance again. They are shallow things, but they were a big part of his identity so it's a relief.
Its really great to see him caring about music and his appearance again. They are shallow things, but they were a big part of his identity so it's a relief.
I love hearing Chase pray. He says it's not a good prayer because he can't say actual words, but it's the most beautiful thing I have ever heard.
Tonight my prayers are full of gratitude for the simple miraculous moments like shopping with Chase or talking about music. He introduced me to dubstep, and I introduced him to Simon and Garfunkel, and REM. It's amazing how much he can communicate without speaking, I usually just make up something in my favor if I don't understand him, and he just shakes his head and smiles. Stuff like, oh you think I'm the most amazing mom in the world- awe - thanks chase! Hee hee!
We continue to pray each day for his speech and mobility to keep improving. We continue to pray for you and your families. We pray you have laughter, and joy this week. May God bless you and keep you until we meet again. We are legion.
Tonight my prayers are full of gratitude for the simple miraculous moments like shopping with Chase or talking about music. He introduced me to dubstep, and I introduced him to Simon and Garfunkel, and REM. It's amazing how much he can communicate without speaking, I usually just make up something in my favor if I don't understand him, and he just shakes his head and smiles. Stuff like, oh you think I'm the most amazing mom in the world- awe - thanks chase! Hee hee!
We continue to pray each day for his speech and mobility to keep improving. We continue to pray for you and your families. We pray you have laughter, and joy this week. May God bless you and keep you until we meet again. We are legion.
** Video Links**
How the Therapist trains Chase's Tongue
Learning N's and Adding the Oh sound to get NO!
Day 79
Thursday September 4th
11:30 pm
11:30 pm
Chase Update:
Day 44 at Craig Rehab
Day 44 at Craig Rehab
Chase went to most of his classes on his own today. We were experimenting with how capable he was of getting himself to and from classes without Mom by his side. He did amazing of course. I don't have a lot to report about his day, because I was absent.
We found out today that they changed our release day to the 20th instead of the 25th. We still haven't decided what our plan is for outpatient care are. There is no outpatient facility at home, but we are so sick of being away from home. Time is not passing it's racing.
Please pray today that The Lord will guide and inspire us toward the correct path. That he will make it obvious which direction we should go. Please pray that chases soft palette will begin to work properly so that he can speak. Bless he will improve 5 days quicker than he has been. May God bless you and keep you until we meet again. We are Legion!
Please pray today that The Lord will guide and inspire us toward the correct path. That he will make it obvious which direction we should go. Please pray that chases soft palette will begin to work properly so that he can speak. Bless he will improve 5 days quicker than he has been. May God bless you and keep you until we meet again. We are Legion!
** Video Links**
Learning to say "S" sounds. He has to plug his nose because his soft palette doesn't go up and all his air escapes out of his nose.
Finally found the time and energy to complete Chase's helmet.
Finally found the time and energy to complete Chase's helmet.
Day 80
Friday September 5th
8:30 pm
Chase Update:
Day 45 at Craig Hospital
Day 45 at Craig Hospital
Wow! 80 days since the accident, 80 days since we have been home. Chase was able to get his soft pallet to work for a couple of minutes with some stimulation today. It's a huge step. In PT today chase used an anti gravity treadmill it was cool to see. I'll post the videos. It takes some of the weight of his legs so he can work on his form.
In OT chase stretched and exercised his left shoulder, trying to strengthen it and help retrain the brain to overcome the left side weakness. Chase also did plank to push-up's he could do 5-6 at a time. I missed a lot of stuff today, because I am giving him space to do it on his own and I am incapable of sitting there and being a quiet observer.
In OT chase stretched and exercised his left shoulder, trying to strengthen it and help retrain the brain to overcome the left side weakness. Chase also did plank to push-up's he could do 5-6 at a time. I missed a lot of stuff today, because I am giving him space to do it on his own and I am incapable of sitting there and being a quiet observer.
Chase set three goals he wants to accomplish before we leave here.
1. To get off the feeding tube.
2. To be able to swallow thin liquids
3. To be able to speak.
2. To be able to swallow thin liquids
3. To be able to speak.
It seems an impossible task to accomplish these things in 15 days, but impossible is a word for people who don't know God. Even with my immense faith I am daunted. So I am sending out a call to our legion. Please join us once again in prayers and fasting for Chase. That he will regain mastery over his body. That he will be able to swallow and chew well enough to eat more efficiently, and consume enough calories by mouth.
Please petition The Lord for Chases soft pallet and throat to work so that he can speak, and swallow his liquids better. There is an urgency vibrating in my body that I can't address without the lords miraculous works. Thank you for heeding our call. Thank you for being part of our miracles. May God bless you and keep you until we meet again. We are Legion.
Please petition The Lord for Chases soft pallet and throat to work so that he can speak, and swallow his liquids better. There is an urgency vibrating in my body that I can't address without the lords miraculous works. Thank you for heeding our call. Thank you for being part of our miracles. May God bless you and keep you until we meet again. We are Legion.
Happy Friday!
Day 81
Saturday September 6th
9:00 pm
Kami/Chase Update: Day 81
Day 46 at Craig rehab
Day 46 at Craig rehab
Chase and I did nothing today. It was awesome. Neither of us slept well last night so we napped a bunch today, we ate, and we watched movies. That's it. It was amazing.
This was a really busy week for Chase, and a stressful one for me, as I try and prepare for us to go home. I'm trying not to lose it completely from worry and stress until my clinical care case manager gets back from vacation on Monday. I lost almost a whole week of preparation when they moved our release date forward, and I am panicking big time.
I'm still not sure if we are going to have to go somewhere else to do outpatient, or if there are available services for us in Williston. I don't like the unknown!
I am praying fervently that The Lord will lead me to whatever path is best for Chase's recovery, and hope it's also what's best for our family as a whole. I mentioned staying here for outpatient or even going to St George and my husband and kids were devestated. We have all been doing our best, but we just want to be a family again. One of the reasons I asked everyone to pray for more miraculous progress is that the more chase progresses before we leave here, the less outpatient care he needs.
This was a really busy week for Chase, and a stressful one for me, as I try and prepare for us to go home. I'm trying not to lose it completely from worry and stress until my clinical care case manager gets back from vacation on Monday. I lost almost a whole week of preparation when they moved our release date forward, and I am panicking big time.
I'm still not sure if we are going to have to go somewhere else to do outpatient, or if there are available services for us in Williston. I don't like the unknown!
I am praying fervently that The Lord will lead me to whatever path is best for Chase's recovery, and hope it's also what's best for our family as a whole. I mentioned staying here for outpatient or even going to St George and my husband and kids were devestated. We have all been doing our best, but we just want to be a family again. One of the reasons I asked everyone to pray for more miraculous progress is that the more chase progresses before we leave here, the less outpatient care he needs.
I'm tired. I just want to snuggle with my family, and be home. The 14 days we have left seem like a lifetime and the blink of an eye all at once.
Please continue to pray for us, and if you're LDS please add us to your fast tomorrow. I sure hope The Lord doesn't have a quota for miracles because we have definitely received our fair share.
Please continue to pray for us, and if you're LDS please add us to your fast tomorrow. I sure hope The Lord doesn't have a quota for miracles because we have definitely received our fair share.
I wanted to answer some of the questions you might have about Chase's recovery and what you can expect when we get home.
please ask me any questions that you have!
please ask me any questions that you have!
Is Chase still chase?
Yes and no.
He is a more innocent happier version of himself. He's still mischievous, disruptive, and impatient. He is still a gentleman, and very sweet. It's hard to know for sure what other differences there are because he doesn't talk.
Yes and no.
He is a more innocent happier version of himself. He's still mischievous, disruptive, and impatient. He is still a gentleman, and very sweet. It's hard to know for sure what other differences there are because he doesn't talk.
How is his memory / does he remember the accident?
He doesn't remember the accident anymore. He remembers going to the temple on Sat, but he doesn't remember after that and his accident was on Wed. His short term and long term memory seem to be excellent. He reminds me of stuff I forget all day long. There may be some gaps, but again he can't speak so we don't know for sure. He Is always oriented to his current time and place.
When is he coming back to school?
I wish I knew the answer to that. He still has to have the missing part of his skull replaced, and then it will depend on where we do his outpatient care. He gets over whelmed and tired easily. So he will probably return slowly.
I wish I knew the answer to that. He still has to have the missing part of his skull replaced, and then it will depend on where we do his outpatient care. He gets over whelmed and tired easily. So he will probably return slowly.
So what else do you want to know?
We love you, we are thankful for you, and we pray The Lord will bless you and keep you until we meet again. We are legion!
Day 82
Sunday September 7th
9:15 pm
Kami/Chase Update:
Day 47 at Craig Rehab
Day 47 at Craig Rehab
Chase is so excited to go home. He is working so hard to be the best version of himself he can be when we leave here. We went to church today, our sweet friend Betsy drove 30 min to pick us up when we couldn't find a ride to our ward. He loves church and was so excited to go.
Chase weighed in at 109.4lbs yesterday. That's a 13.4lb increase since we got to Craig. Only 15.6lbs to go. Chase had a battle with me and the Nurse about fasting today. He prayed about it and told me The Lord was on his side. we compromised with fasting for breakfast only, and a late high calorie lunch. He wows me everyday, as do all my children. I would love to take credit for them, but they came this way.
Chase weighed in at 109.4lbs yesterday. That's a 13.4lb increase since we got to Craig. Only 15.6lbs to go. Chase had a battle with me and the Nurse about fasting today. He prayed about it and told me The Lord was on his side. we compromised with fasting for breakfast only, and a late high calorie lunch. He wows me everyday, as do all my children. I would love to take credit for them, but they came this way.
Yesterday I was a wreck. I was worried, stressed, and scared. This morning I woke up calmer, and as the day has gone on that calm has morphed into peace. Thank you for your fasting and/or prayers. I don't know what the next few weeks, months or even the next year will bring, but I do know that The Lord is at the helm and that he is steering us through our unknown.
Today in church we talked about missionary work, and what makes us afraid to share the gospel- the most precious gift we have. I realized I no longer have any fear of rejection. I have transitioned from someone who believed in God and his son to someone who knows them. I have partaken in their mercy and peace. I have laid myself at their feet and offered myself up to them. There is a difference between having a testimony and being converted. I have always had a testimony, but my conversion is in progress. Conversion is an action word. It involves daily growth and work. Testimonies die when there is no conversion. I am blessed to be a member of The Church of Jesus Christ of Later Day Saints. I know who I am, I know God's Plan, and I will follow him in faith. I don't have to know all the answers, I won't appologize or be ashamed that I believe in God. Regardless of whether his commandments or teachings are politically correct or socially acceptable. I have a Heavenly Father who loves me, and he wants the best for me, I just have to get out of my own way and out of my own head long enough to allow it to happen.
We also talked today about being Christlike. To everyone who has prayed for us, fed us, served us, hugged us, loved us, cried and cheered with or for us- Thank you! Thank you for teaching me how to be more Christlike. One of Christs greatest attributes was submissiveness, he was the greatest of us all, and he allowed himself to become the lowest of us all. Today I let go of my doubts and worries ( again.....I'm a work in progress) I submitted to the will of my father, and said thy will be done. So tonight I ask for your prayers not for specific miracles, but that The Lord will open the way for us to be prepared for whatever path he leads us to. Thank you for your service. We love you, and pray that The Lord will bless you and keep you until we meet again. We are legion.
We also talked today about being Christlike. To everyone who has prayed for us, fed us, served us, hugged us, loved us, cried and cheered with or for us- Thank you! Thank you for teaching me how to be more Christlike. One of Christs greatest attributes was submissiveness, he was the greatest of us all, and he allowed himself to become the lowest of us all. Today I let go of my doubts and worries ( again.....I'm a work in progress) I submitted to the will of my father, and said thy will be done. So tonight I ask for your prayers not for specific miracles, but that The Lord will open the way for us to be prepared for whatever path he leads us to. Thank you for your service. We love you, and pray that The Lord will bless you and keep you until we meet again. We are legion.
Happy Sunday!
Day 83
Monday September 8th
8:00 pm
Chase Update:
Day 48 at Craig hospital
Day 48 at Craig hospital
Chase and I had a rotten sleepless night. His tubal feed leaked all over him numerous times before they finally figured out the problem, people in and out and no rest made today difficult. Chase had a hard time paying attention, and I was a grouch. In spite of Chase had a fun and busy day.
Chase had his first dry needling OT session to try and get rid of the stiffness and subluxation in his left shoulder. It wasn't as bad as we thought it would be.
Chase got to box in PT today, it helped loosen up his trunk so he move at a more normal gait. He had an hour of music therapy, and he worked on his finger movements on the piano as well as using some of the sound he has been learning in speech to music. Chase could see his music therapist coming over the skywalk from his bedroom window so he hid in the bathroom, and scared her so bad when she peaked in to see if he was there. Lol He trounced his T-rec therapist In a game of battleship, and in speech he worked on trying to stimulate his soft palette. You need your soft palette to say letter like p, b, q, k. You also need it to engage the sucking motion. Right now he has to plug his nose or all of the air escapes height his nose.
Right now they are doing a calorie count to see how any calories he is consuming without the tubal feed. They are feeding him overnight with the hopes that it will improve his appetite.
So tonight I am still praying for his soft palette to engage and respond, and for him to be able to eat better.
We are going to bed early tonight, and have asked to not be disturbed unless absolutely necessary. Fingers crossed and prayers sent heavenward for a good nights sleep. We pray you sleep well. And that tomorrow is an amazing day for us all. May the lord bless you and keep you, until we meet again. We are legion.
Chase got to box in PT today, it helped loosen up his trunk so he move at a more normal gait. He had an hour of music therapy, and he worked on his finger movements on the piano as well as using some of the sound he has been learning in speech to music. Chase could see his music therapist coming over the skywalk from his bedroom window so he hid in the bathroom, and scared her so bad when she peaked in to see if he was there. Lol He trounced his T-rec therapist In a game of battleship, and in speech he worked on trying to stimulate his soft palette. You need your soft palette to say letter like p, b, q, k. You also need it to engage the sucking motion. Right now he has to plug his nose or all of the air escapes height his nose.
Right now they are doing a calorie count to see how any calories he is consuming without the tubal feed. They are feeding him overnight with the hopes that it will improve his appetite.
So tonight I am still praying for his soft palette to engage and respond, and for him to be able to eat better.
We are going to bed early tonight, and have asked to not be disturbed unless absolutely necessary. Fingers crossed and prayers sent heavenward for a good nights sleep. We pray you sleep well. And that tomorrow is an amazing day for us all. May the lord bless you and keep you, until we meet again. We are legion.
Day 84
Tuesday September 9th
9:00 pm
Chase Update:
Day 49 at Craig Rehab
Day 49 at Craig Rehab
Chase had unltasounds on his arms today to recheck the deep vein clots he had there. We should know tomorrow if he still has them, finger crossed he doesn't so we don't have to be on blood thinners for 3 more months.
Chase did great in all his classes today. I just hung in the background.
He ate pretty well today, but it takes over an hour for each meal, ugh for both of us.
Phil will be here Friday. As much as he loves his siblings, Chase is excited to have his Dad to himself, I am apparently irrelevant in that equation.
Time is flying, we only have 8 class days left, and we are trying to focus, but we really just want to go home.
Thank you for getting us this far.
When we get home chase meets with the neurosurgeon for a 90 day post OP appointment, and then hopefully we will schedule his bone flap surgery ( covering the missing skull), and we need to get the IVC filter out. The next week we will be starting Outpatient therapies. We still have along road to recovery but everyday is a new miracle.
We pray The Lord will bless you and keep you until we meet again. We are Legion!
Chase did great in all his classes today. I just hung in the background.
He ate pretty well today, but it takes over an hour for each meal, ugh for both of us.
Phil will be here Friday. As much as he loves his siblings, Chase is excited to have his Dad to himself, I am apparently irrelevant in that equation.
Time is flying, we only have 8 class days left, and we are trying to focus, but we really just want to go home.
Thank you for getting us this far.
When we get home chase meets with the neurosurgeon for a 90 day post OP appointment, and then hopefully we will schedule his bone flap surgery ( covering the missing skull), and we need to get the IVC filter out. The next week we will be starting Outpatient therapies. We still have along road to recovery but everyday is a new miracle.
We pray The Lord will bless you and keep you until we meet again. We are Legion!
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