Jackson and his magical hot dog are doing well (hope most of you read the post before this one to explain the hot dog.) :) We are adjusting into a routine, or as routine as our lives can get. Therapy's are going great! It is amazing to see the differences in Jax post surgery.. ex. he is going more days than before without a nap, more engaged in what is going on around him, expanding his vocabulary, has this sudden elephant like appetite and just genuienly fantastic. AND Bob has become his right hand hand, bob wants to participate in eating, drinking, brushing teeth, school activities, etc. So proud of him or should I say them?!
Jax has made the decision that walking into school with adult supervision is no longer cool. As soon as we walk in the front doors he immediately pushes my hand away, goes about his way and says "Bye Mom". So independent! .. He wants to start drinking out of a big boy cup w/o a straw so his speech therapist set up a swallow study (he wasn't cleared last time for thin liquids from open cup). Hope this time is different!
He has a follow-up appt. with Dr. Handler next week and rehab doc the following month. Keeping positive thoughts for both appt.'s!
Happy Valentines Day Team Jax! We appreciate and love you all.
Monday, February 13, 2012
Thursday, January 26, 2012
Plenty of rest
We got home Tues. evening with some hesitation on my part. The doc's assured us that they felt Jax was ready to come home and recover in his own surroundings. Eric was also a voice of positivity and ready to be home too. Brendan was excited to have brother home but a little disappointed that a restriction was put on their wrestling. :) Jax has done a good amount of resting with one episode of vommitt when we got in the car. A quick phone call to the doc and calming of my nerves..he said it can take some time for Jax to adjust to the new lower pressure and for some of the meds to get out of his system. The rest of the day he was in much better spirits.
My body finally told me last night that I had been running on pure adrenaline and it was time I let it all set in. It is by God's hand on our lives that we continue walking along our path with faith and hope. When we reflect on the last 4 years and all that we as a family and Jax as an individual have endured it is proof that God has carried us through. Eric and I were looking at all Jackson's scars last night and thinking they are his "battle scars"..symbols of his determination and perserverance...he has been to battle more than once & continues to be the warrior of our lives!
A funny story..while in the hospital the nurse showed Jax what the actual shunt looks like, he kept touching his head in an effort to understand. It has a very long tube attached to the actual shunt and a soft portion on the top that he kept pushing on. When he was asked what he wanted to call it he said "hot dog" (of course, it is long and bendable, what else would you call it?!?)..well who are we to disagree, it is now his "magical hot dog." Silly boy!
Please pray for continued healing for Jackson, strength for his body and happiness for his soul.
Tina
p.s. his new school pic is posted at the bottom of the blog page..we had forgotten it was picture day but what other shirt would Mr. Football have wanted his pic taken in..? :)
My body finally told me last night that I had been running on pure adrenaline and it was time I let it all set in. It is by God's hand on our lives that we continue walking along our path with faith and hope. When we reflect on the last 4 years and all that we as a family and Jax as an individual have endured it is proof that God has carried us through. Eric and I were looking at all Jackson's scars last night and thinking they are his "battle scars"..symbols of his determination and perserverance...he has been to battle more than once & continues to be the warrior of our lives!
A funny story..while in the hospital the nurse showed Jax what the actual shunt looks like, he kept touching his head in an effort to understand. It has a very long tube attached to the actual shunt and a soft portion on the top that he kept pushing on. When he was asked what he wanted to call it he said "hot dog" (of course, it is long and bendable, what else would you call it?!?)..well who are we to disagree, it is now his "magical hot dog." Silly boy!
Please pray for continued healing for Jackson, strength for his body and happiness for his soul.
Tina
p.s. his new school pic is posted at the bottom of the blog page..we had forgotten it was picture day but what other shirt would Mr. Football have wanted his pic taken in..? :)
Monday, January 23, 2012
Another hurdle..prayer request
The last 24 hrs are sort of a blur. We took Jax to the ER at Children's last night because of vommitting, low energy and overall just not acting like himself. They did a CT scan and confirmed that he was developing hydrocephalus (abnormal accumulation of CSF that the body is not circulating properly.) We were admitted and saw Dr. Handler this morning. He agreed that it was time to proceed with the shunt surgery. The surgery was completed at approx. 6:10pm with 3 incisions and a shunt inserted behind his left ear. The doc said it went well. The initial recovery is always a hard time due to the time it takes for Jax to adjust. He is nauseous tonight and sleepy.
We knew when we decided on the hemispherectomy that hydrocephalus was one of the risk factors. I guess deep down we were hoping we wouldn't have to worry about it. Our angel has been through so much in such a short time.
Please say a prayer for a seamless recovery which includes no infection and no malfunction!! And that our boy gets back to his spunky self soon.
Brendan has been so loving and patient. I know he is anxious for brother to get home. How much we all crave to be under the same roof again, in our day to day routine!
Here is a pic of the sweet boy resting comfortably this afternoon..
We knew when we decided on the hemispherectomy that hydrocephalus was one of the risk factors. I guess deep down we were hoping we wouldn't have to worry about it. Our angel has been through so much in such a short time.
Please say a prayer for a seamless recovery which includes no infection and no malfunction!! And that our boy gets back to his spunky self soon.
Brendan has been so loving and patient. I know he is anxious for brother to get home. How much we all crave to be under the same roof again, in our day to day routine!
Here is a pic of the sweet boy resting comfortably this afternoon..
Friday, January 13, 2012
Smiling
Great news, Jackson's EEG results showed NO signs of seizures!! Tears of joy for today. We are all extremely happy. We will rest peacefully tonight and say many prayers of praise.
We will slowly start decreasing 1 of the medication dosages and perform another EEG in a few months.
Brendan is so sweet to his brother. He made the ride up to Children's with us today. While we were at the doc office, after getting the results, I overheard him telling Jax "Everything is going to be fine, you are so strong." :) What a kid!
Thank you Team Jax for your prayers, support and compassion.
Tina
We will slowly start decreasing 1 of the medication dosages and perform another EEG in a few months.
Brendan is so sweet to his brother. He made the ride up to Children's with us today. While we were at the doc office, after getting the results, I overheard him telling Jax "Everything is going to be fine, you are so strong." :) What a kid!
Thank you Team Jax for your prayers, support and compassion.
Tina
Tuesday, January 10, 2012
Doctor, doctor & more doctor's
"The Lord is good to those whose hope is in him, to the one who seeks him."
Lamentations 3:25
Today was a really good day and one that we have been anxious about. We were at Children's for majoirty of the day for follow-up appt's with Dr. Laoprosert (epileptologist), EEG and Dr. H (neuro-surg).. unfortunately we won't get the results of the EEG till Friday. Both doc's, who each had a large part in our initial decision and the preparation for the surgery, were extremely pleased with Jackson post surgery! Dr. Laoprosert was complimenting Jackson's smile, walking and response time to questions. To give a little background info, before we made the final decision on surgery, we put Dr. L through a lot of Q and A sessions, numerous phone calls and more questions regarding different treatments. He was patient with us but, in the big picture, he knew that the surgery had to be done. Eventually, when we had all our questions answered, followed through with many prayers, we were able to make the best decision! We are praying for good news on Friday from the EEG! If all is well, we can start weening one of the meds..that would be great!!
The appt. with Dr. H was short and sweet. He looked at Jackson's eyelids and wants another scan done next week to compare to last weeks. The eyelids are apporx. 10% better but still have the sleepy look. He asked Jax to walk to the door and Mr. Cool got off his chair, put his hand in his pocket and swaggered out. :) He then made sure to tell Dr. H "bye bye" several times.. he had enough with doc appt's.
Here is a video of Jax being silly & working hard in PT last week with the wonderful Mrs. Carin ..
Once we talk to the doc on Friday I will make sure to update. Our appt. day continues into tomorrow with ot, rehab doc appt and speech. We are so blessed that Jax is such a good patient and works SOOOO hard. :) Way to go buddy!
One last thing, Bob a.k.a Righty, tried to grab carrots at dinnertime and gave doc's high 5 with no prompting!!!
Tina
Lamentations 3:25
Today was a really good day and one that we have been anxious about. We were at Children's for majoirty of the day for follow-up appt's with Dr. Laoprosert (epileptologist), EEG and Dr. H (neuro-surg).. unfortunately we won't get the results of the EEG till Friday. Both doc's, who each had a large part in our initial decision and the preparation for the surgery, were extremely pleased with Jackson post surgery! Dr. Laoprosert was complimenting Jackson's smile, walking and response time to questions. To give a little background info, before we made the final decision on surgery, we put Dr. L through a lot of Q and A sessions, numerous phone calls and more questions regarding different treatments. He was patient with us but, in the big picture, he knew that the surgery had to be done. Eventually, when we had all our questions answered, followed through with many prayers, we were able to make the best decision! We are praying for good news on Friday from the EEG! If all is well, we can start weening one of the meds..that would be great!!
The appt. with Dr. H was short and sweet. He looked at Jackson's eyelids and wants another scan done next week to compare to last weeks. The eyelids are apporx. 10% better but still have the sleepy look. He asked Jax to walk to the door and Mr. Cool got off his chair, put his hand in his pocket and swaggered out. :) He then made sure to tell Dr. H "bye bye" several times.. he had enough with doc appt's.
Here is a video of Jax being silly & working hard in PT last week with the wonderful Mrs. Carin ..
Once we talk to the doc on Friday I will make sure to update. Our appt. day continues into tomorrow with ot, rehab doc appt and speech. We are so blessed that Jax is such a good patient and works SOOOO hard. :) Way to go buddy!
One last thing, Bob a.k.a Righty, tried to grab carrots at dinnertime and gave doc's high 5 with no prompting!!!
Tina
Sunday, January 1, 2012
We wait and see
Jax had an mri and appt. with neuro np on Friday. Basically he is borderline right now in regards to if the eye issues we are seeing are related to pressure build-up (hydrocephalus), a virus or a residual effect from surgery. Time will tell..if he starts regressing, vomitting, lathargic, then back we go asap..if he continues to behave normally and no other alarming signs we will go back end of next week for another scan to double check. Over the weekend his behavior has been fairly typical, which is great, but still keeps us questioning what is going on. To explain the eye issue best, he looks like a really tired boy who really isn't as tired as he looks, sounds odd uh?
Cutie striking a pose..
We got the new AFO's on Fri. and the right one looks like something robo cop would wear! Attempted to find shoes that fit it with no luck. Ended up ordering some online so lets hope they work.
Busy week coming up.. kids go back to school, lots of appt's and squeezing work into the mix! Wish me luck..
Tina
Cutie striking a pose..
Busy week coming up.. kids go back to school, lots of appt's and squeezing work into the mix! Wish me luck..
Tina
Thursday, December 29, 2011
Recovery, not always easy..
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
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
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