I thought I would write a bit more about where we are with Jaxon's condition at the moment. Here is a rundown - last Thursday we left Maggie with our friends (thank you to the Grotenhuis family for having her AGAIN she loves you guys) and drove down to Children's Memorial Hospital in Chicago with Lia and Jaxon.
My SWEET sister and her kids drove up from Cincinnati to Chicago and met us at the hospital to take Lia to visit with them for a week...so currently Lia is partying with her cousins for a week and loving it. (Thank you Jenn/Gar for having her...so nice of you)
After sending Lia with Jenn we checked in...our appointment was for 11am but we waited for about 2 1/2 hours before we were seen, fun times. Fortunately they had pretty cool toys in the waiting room and Jenn left us with a bag of chocolate chip cookies! We met with the head of Neurosurgery he reviewed Jaxon's CT's, MRI's and gave him a physical exam. This doctor does Chiari decompression surgery all the time, but felt like because of the problems with Jaxon's spine he should refer us to a neurosurgeon at the University of Iowa (Arnold Menezes) that has a lot of spine/skull based surgery expertise. So currently he is sending Jaxon's information to Iowa for review. Yesterday(Wednesday) we met with a neurosurgeon at the Children's Hospital in Milwaukee to get his opinion. We had to wait for a LONG time again before seeing anyone...and we made the mistake of taking Maggie with us.....note to self do not bring the 2 yr. old to any further appointments. She was a little crazy by the end and kept making it hard to listen to what the surgeon was saying. He was good to answer our questions though and talk about what he thought would be best for Jax. His plan would include removal of some of the skull bone (Chiari Decompression) to give Jaxon more room where the Chiari Malformation is causing pressure and headaches. After that they would most likely do some fusion (with the use of screws or rods) of the vertebrae/skull to make sure he has good stability in his neck and head. Jaxon has had a couple really good weeks (as far as not having many symptoms). The Doc in Milwaukee said that if he's not having major symptoms it may be beneficial to hold off on surgery for a bit and give his bones a chance to grow as much as possible, because the bigger the bones the easier they are to fuse. Recovery time for the surgery he is talking about would be apx. 2 days in the ICU, and then four to five days total hospital stay. Then of course some recovery time at home..and three months of wearing a collar to stabilize his neck while it heals. Dr, Lew (in Milwaukee) also said that is Jaxon's case which is fairly rare he would recommend seeing Dr. Menezes in Iowa for a second opinion because apparently he is "the man" for this particular problem. So hopefully we will be traveling to Iowa to get his opinion soon! :)
So.. i hope all of my rambling made some sense and gave everyone an update on what's going on. We can't thank you enough for all of your love, support and prayers. It means the world to us that people are thinking of Jaxon. At the moment he is feeling quite well and enjoying his summer. Both docs we met with said that if he continues to feel this well we can still go home to Utah to visit family in August! Yeah!!
My SWEET sister and her kids drove up from Cincinnati to Chicago and met us at the hospital to take Lia to visit with them for a week...so currently Lia is partying with her cousins for a week and loving it. (Thank you Jenn/Gar for having her...so nice of you)
After sending Lia with Jenn we checked in...our appointment was for 11am but we waited for about 2 1/2 hours before we were seen, fun times. Fortunately they had pretty cool toys in the waiting room and Jenn left us with a bag of chocolate chip cookies! We met with the head of Neurosurgery he reviewed Jaxon's CT's, MRI's and gave him a physical exam. This doctor does Chiari decompression surgery all the time, but felt like because of the problems with Jaxon's spine he should refer us to a neurosurgeon at the University of Iowa (Arnold Menezes) that has a lot of spine/skull based surgery expertise. So currently he is sending Jaxon's information to Iowa for review. Yesterday(Wednesday) we met with a neurosurgeon at the Children's Hospital in Milwaukee to get his opinion. We had to wait for a LONG time again before seeing anyone...and we made the mistake of taking Maggie with us.....note to self do not bring the 2 yr. old to any further appointments. She was a little crazy by the end and kept making it hard to listen to what the surgeon was saying. He was good to answer our questions though and talk about what he thought would be best for Jax. His plan would include removal of some of the skull bone (Chiari Decompression) to give Jaxon more room where the Chiari Malformation is causing pressure and headaches. After that they would most likely do some fusion (with the use of screws or rods) of the vertebrae/skull to make sure he has good stability in his neck and head. Jaxon has had a couple really good weeks (as far as not having many symptoms). The Doc in Milwaukee said that if he's not having major symptoms it may be beneficial to hold off on surgery for a bit and give his bones a chance to grow as much as possible, because the bigger the bones the easier they are to fuse. Recovery time for the surgery he is talking about would be apx. 2 days in the ICU, and then four to five days total hospital stay. Then of course some recovery time at home..and three months of wearing a collar to stabilize his neck while it heals. Dr, Lew (in Milwaukee) also said that is Jaxon's case which is fairly rare he would recommend seeing Dr. Menezes in Iowa for a second opinion because apparently he is "the man" for this particular problem. So hopefully we will be traveling to Iowa to get his opinion soon! :)
So.. i hope all of my rambling made some sense and gave everyone an update on what's going on. We can't thank you enough for all of your love, support and prayers. It means the world to us that people are thinking of Jaxon. At the moment he is feeling quite well and enjoying his summer. Both docs we met with said that if he continues to feel this well we can still go home to Utah to visit family in August! Yeah!!
We will keep you posted! :)
Here are some pics of Jax having fun this week...since big sis is out of town he got to choose all of our activities - which he loved.
8 comments:
We are keeping our fingers crossed and hope that the Utah visit can happen!! He is such a sweet boy, I am glad he got to do some fun things this week. Love and prayers from Utah.
Thank you for the update, I've been watching your blog and thinking about your family a lot. I get blog background ideas from you too!
GoOd, gOoD, GOoD news!! So glad that Jax has been feeling well enough to enjoy a bit of summer. Sweet guy. And OH!! So good to hear that we might still be able to see you...soon. Our fingers are double crossed :) Sounds like you are finally getting some answers to the questions, always good to know what the heck is going on. We're still thinking and praying for you all. More love from Utah, miss you all!!
Thanks for the update, Kelly. Jaxon continues to be in our prayers. I'm so glad to hear he's been having some really good days! I recongize a lot of the photos...we've been traveling to the same local "fun" places as well. Is Lia home now? Let's get together. And if/when you head to Iowa, if Maggie and Lia want to stay here, we'd love to have them!
Kell, been meaning to comment earlier... My thoughts and prayers are with Jaxon and your family. I hope he continues to have a wonderful summer. It's tough to see our little ones like this. Love ya!
Oh my goodness, Kel! I am so sorry I didn't write to you sooner about all of this. I have seriously been without the internet for almost 4 weeks with all the moving, vacationing, etc. and am just barely checking in on your blog.
My prayers are with you guys and if you need anything (except a meal . . . I'm not sure how well that would travel in the mail ;) ) please let me know.
I love you guys and am hoping for the best as you visit so many doctors and decide what procedures to follow. I hope Jaxon keeps feeling a bit better, too . . . he's such a cute kid!
Laur
So glad to hear the news! Looks like you are having some fun this summer, and hopefully Jax will continue to feel good so you can get back to Utah.
Having Lia was great. Loved seeing all of you last night at the most fabulous mexican restaurant. Who could have predicted food poisoning? I really love you guys.
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