I hope everyone had a very Merry Christmas and preparing for a Happy New Year!
The winter colds have come upon us so we have stayed homebound for majority of the week. Everyone seems to be on the mend but Jax is more fatigued than usual and eyelids look slightly swollen. We took a trip to the pediatrician's today, he said the left ear is red & eyes watery from cold/sinus, which could explain the fatigue but we should still discuss w/ neuro. Unfortunately, right now any little irritation can really affect him. Doc prescribed antiobiotics for the ear. Made a call to Children's and they have set tentative scans for Tues. just in case things don't improve. We will see how he feels over the weekend. I'm not exactly sure why he isn't opening his eyes fully, swelling from surgery? I may need to call eye doc as well. Of course first thought is neuro related but I don't want to miss something else that could be going on. Praying this resolves sooner than later!
Jax is scheduled to start school next week, I really hope he is still able to. He will be upset if he has to wait any longer. He also resumes his therapy schedule next week which he definitely benefits from.
We go to get the new afo's/night splints tomorrow at Children's. Jax will be excited to see his new Bronco designed boots.
Brendan is enjoying winter break and gets to go bird hunting with dad & cousins tomorrow. He is really excited and hopes to shoot a coyote. Oh great!
Tina
Thursday, December 29, 2011
Monday, December 19, 2011
We are home..
Home and slowly getting settled. We got home last Tues. but it feels like yesterday..between getting caught up on mail, laundry, follow-up appt's and therapy, we are enjoying just all being under one roof. The pure feeling of happiness, just by being home and eating breakfast together, is great. The hardest part has been getting back into the hussel and bussel that life is; sometimes to our dismay. Can't we all just slow down and smell the flowers ;). I say that as I let my road rage set in and hurry it along in the crowded grocery store.
Jax is doing great adjusting to his rehab team and crazy schedule. They are picking up right where they left off with a few minor adjustments. He is walking really good around the house and other familiar surroundings. His balance is going to require some changes due to the left lift being on and then when the left afo comes it will be a new slew of changes. He'll do great!
We were able to stop in Jackson's school to say hello..I don't know who was more excited, Jax, his classmates or his teachers. He was high fiving all his friends and they told him they loved him, it was so sweet. He told me "bye mom", "me go with Cheryl" - his para who we absolutely adore.
Thanks to Mimmy for making us our belated Thanksgiving day dinner. Also, to Rhonda for the spectacular ham and fixings. It was all delicious!
Jax has joined the other Tebow fans in the Tebow'er pose..I'll post pic soon.
Thanks again for all the positive thoughts, prayers and support!
Jax is doing great adjusting to his rehab team and crazy schedule. They are picking up right where they left off with a few minor adjustments. He is walking really good around the house and other familiar surroundings. His balance is going to require some changes due to the left lift being on and then when the left afo comes it will be a new slew of changes. He'll do great!
We were able to stop in Jackson's school to say hello..I don't know who was more excited, Jax, his classmates or his teachers. He was high fiving all his friends and they told him they loved him, it was so sweet. He told me "bye mom", "me go with Cheryl" - his para who we absolutely adore.
Thanks to Mimmy for making us our belated Thanksgiving day dinner. Also, to Rhonda for the spectacular ham and fixings. It was all delicious!
Jax has joined the other Tebow fans in the Tebow'er pose..I'll post pic soon.
Thanks again for all the positive thoughts, prayers and support!
Sunday, December 11, 2011
Kicking and Screaming..
You know it is time to go home when the nurses have to check in on you for being too loud. ;) Last night we had some friends stop by (thanks for dinner Mandy) and Jax was hamming it up. He had a surge of energy that lasted till about 10:30pm!
Here is a video from Thurs. in PT with one of his fav in-patient therapist's, Char. She treated him when we were here 4 yrs ago..she's great! Righty leg was kicking so well and then got interrupted by hearing music.. Jax gets dance fever when he hears a good beat. The blue tape on the left shoe is good ol' duct tape, they added a lift to his shoe for a variety of reasons but the main one being a height difference w/ an afo on his right leg. It is taking some getting used to but seems to improve his weight shift from left to right.
http://youtu.be/XkS2bzVmBhQ
We almost got away with a virus free stay but a yucky mouth virus got Jax this week, he had sores on his lips that were super painful. It limited his eating and drinking..no complaining once he got numbing cream & the doc prescribed all day milkshakes. They seem to be a little better today.
2 days and we are homebound! Jax has been fitted for new afo's, a night splint and more botox than one could ask for. We will see the neurosurgeon on Monday, Dr. Handler, who by the way is a really nice guy and a brilliant surgeon...the epileptologist and rehab docs..a lot of follow-up appt's in Jan. plus an eeg. We haven't seen any seizure activity (thank the Lord!!) but an eeg will confirm if any electrical activity.
There are still a few staff members here from when we were here 4 yrs ago and one of the gals told us this week that she was shocked at how good Jax was doing..she said to be completely honest she didn't expect him to be talking or walking. We are reminded how blessed we are to have a strong, determined little boy who was given a special spirit by Him.
Please say a prayer for all the children here, especially during the Christmas holiday. It does something special for the soul being around all the hard working, amazing spirits. Choose today as a day to be thankful for your health and the great lengths that medical technology has brought to us.
This is the verse that came up on my daily bible app and I thought I would share..
1 Corinthians 13:7-8
"Love bears all things, believes all things, hopes all things, endures all things. Love never ends. As for prophecies, they will pass away; as for tongues, they will cease; as for knowledge, it will pass away."
Tina
Here is a video from Thurs. in PT with one of his fav in-patient therapist's, Char. She treated him when we were here 4 yrs ago..she's great! Righty leg was kicking so well and then got interrupted by hearing music.. Jax gets dance fever when he hears a good beat. The blue tape on the left shoe is good ol' duct tape, they added a lift to his shoe for a variety of reasons but the main one being a height difference w/ an afo on his right leg. It is taking some getting used to but seems to improve his weight shift from left to right.
http://youtu.be/XkS2bzVmBhQ
We almost got away with a virus free stay but a yucky mouth virus got Jax this week, he had sores on his lips that were super painful. It limited his eating and drinking..no complaining once he got numbing cream & the doc prescribed all day milkshakes. They seem to be a little better today.
2 days and we are homebound! Jax has been fitted for new afo's, a night splint and more botox than one could ask for. We will see the neurosurgeon on Monday, Dr. Handler, who by the way is a really nice guy and a brilliant surgeon...the epileptologist and rehab docs..a lot of follow-up appt's in Jan. plus an eeg. We haven't seen any seizure activity (thank the Lord!!) but an eeg will confirm if any electrical activity.
There are still a few staff members here from when we were here 4 yrs ago and one of the gals told us this week that she was shocked at how good Jax was doing..she said to be completely honest she didn't expect him to be talking or walking. We are reminded how blessed we are to have a strong, determined little boy who was given a special spirit by Him.
Please say a prayer for all the children here, especially during the Christmas holiday. It does something special for the soul being around all the hard working, amazing spirits. Choose today as a day to be thankful for your health and the great lengths that medical technology has brought to us.
This is the verse that came up on my daily bible app and I thought I would share..
1 Corinthians 13:7-8
"Love bears all things, believes all things, hopes all things, endures all things. Love never ends. As for prophecies, they will pass away; as for tongues, they will cease; as for knowledge, it will pass away."
Tina
Wednesday, December 7, 2011
Game still-on..
Sorry for the lack of updates, the last few days have been super busy with OT, PT, ST and a variety of therapy oriented groups. Jackson's walking continues to improve with more ball playing than you can imagine. He is either rolling, throwing, catching or kicking a ball in therapy..it is so cool that the therapist incorporate his love of sports with each session, I know he appreciates it! He got a visit tonight by a womans professional soccer player and was totally smitten. :)
We finalized our remaining stay today - field trip tomorrow to Children's Museum (our first outing in 2 1/2 wks, YAY) - botox for right side & lots of it on Fri. morning, stitches from drain removed same time since Jax will be on happy gas - discharge on Tuesday the 13th, yikes. We discussed discharging with the rehab team and they feel that since Jax is doing so well and we have a great outpatient team that it would be okay. Our outpatient PT is working hard to get all his therapy scheduled for 2-3 x's a week but with the holiday fast approaching it is challenging. Good thing we still have a basement full of therapy goods. :)
Another gigantic THANK YOU to our family and friends. They have made sure we don't go hungry or nutty :)! They have sacrificed enormous amounts of time to visit us, energy to cook for us and words of encouragement to keep us going strong...what a fantastic team!
With love,
Tina
We finalized our remaining stay today - field trip tomorrow to Children's Museum (our first outing in 2 1/2 wks, YAY) - botox for right side & lots of it on Fri. morning, stitches from drain removed same time since Jax will be on happy gas - discharge on Tuesday the 13th, yikes. We discussed discharging with the rehab team and they feel that since Jax is doing so well and we have a great outpatient team that it would be okay. Our outpatient PT is working hard to get all his therapy scheduled for 2-3 x's a week but with the holiday fast approaching it is challenging. Good thing we still have a basement full of therapy goods. :)
Another gigantic THANK YOU to our family and friends. They have made sure we don't go hungry or nutty :)! They have sacrificed enormous amounts of time to visit us, energy to cook for us and words of encouragement to keep us going strong...what a fantastic team!
With love,
Tina
Saturday, December 3, 2011
Jax is back..
Mr. Independent has arrived. :) Jackson is ready to exert some control over his environment (who can blame him?). He wants to do EVERYTHING on his own including cutting his pancakes, pushing his wheelchair (oxymoron?), getting in/out bed, taking stethoscope from nurses to do his exam, etc.. It is great to see! That's my boy.
The rehab docs have been very vigilent in assessing him everyday and thinking up new ideas for his gait pattern and maintaining righty's range of motion. He got fitted for a night splint that will allow us to adjust the intensity of his right leg stretch. They are also discussing the possbility of more botox on his right side. I hope this week offers even more progress than last week. Righty arm continues to amaze us with all the movement and even
I always tell people Jackson does better speech wise around people he is familiar with. My theory is proving to be true. He will talk around the family way more than he wants to talk for the speech therapist here that he just met. I may need to record him so they know what he can really say.
You may wonder what we do to stay busy in the hospital..here's a taste :)
http://youtu.be/ubXs5Icd39o
Haha..
Again, we appreciate all the support and love from Team Jax!
Tina
The rehab docs have been very vigilent in assessing him everyday and thinking up new ideas for his gait pattern and maintaining righty's range of motion. He got fitted for a night splint that will allow us to adjust the intensity of his right leg stretch. They are also discussing the possbility of more botox on his right side. I hope this week offers even more progress than last week. Righty arm continues to amaze us with all the movement and even
I always tell people Jackson does better speech wise around people he is familiar with. My theory is proving to be true. He will talk around the family way more than he wants to talk for the speech therapist here that he just met. I may need to record him so they know what he can really say.
You may wonder what we do to stay busy in the hospital..here's a taste :)
http://youtu.be/ubXs5Icd39o
Haha..
Again, we appreciate all the support and love from Team Jax!
Tina
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