Prayer Request for Zoey

Below on the right is a button to Zoey's page. She was just diagnosed this week with Acute Myeloid Leukemia. She has beaten Infantile Spasms...and is now going through chemo to battle this too! She has been through quite a lot in her little life. Her Mom, Heather, was very supportive to us during Jack's surgery. Please add Zoey and her family to your prayers.

Little Turtle

Here are some pictures from Halloween and our turtle! He was not too happy about his costume, but was a good sport for awhile. The costume was a little too warm for our Texas weather.

We had Uncle Adam over for dinner and we went trick-or-treating around the neighborhood! We had a good time. Jackson was a little fussy this afternoon and evening...don't know if it is his molars or what?!? He is putting everything in his mouth...so that seems to be the case. Our little Jack-o-lantern is off to bed now. Happy Halloween...and have a good weekend!

Home Sweet Home...

Well, we made it home Tuesday afternoon after a long, but good road trip. I am sorry it has taken me awhile to post, but so much to catch up on after being gone for so long. We were in Detroit for a little over 4 weeks, but Jackson and I have actually been out of our house since the beginning of July. Before Detroit, we were doing treatment therapies in Austin and staying with my parents. So we are truly happy to be at home after 4 months away! We also got hit with IKE, but Tony did a great job getting our house ready for us with all the remodeling repairs and cleaning.

Tony was so happy to see Jackson! It was so hard for him to leave Jackson 2 days after surgery and wait 4 weeks to see him. He just cannot believe how "different" Jack is now. We are really enjoying our time together and watching our son with new amazement!

Yesterday, we had a first Occupational therapy appointment at a private facility that deals in Pediatric Neurodevelopmental Therapy. The therapist was so awesome with Jackson and has over 20 years of experience...I am so glad we found her! We will start going to Occ. Therapy 3 times a week beginning next week. We still have to get evaluations for PT, Speech and Vision therapy. (Vision since Jackson lost left sided peripheral vision from the surgery...but will get better again over time.)

Today, we took Jackson to see his Epileptologist here in Houston. He too could see great changes in Jackson and commented that we could not be in a better place post-surgery. We agree! We will follow up with him in 3 months for an EEG and evaluation.

Jackson is sleeping through the night in his OWN bed in his room, he is all over the place, moving, grabbing everything in sight, trying to get our dogs, talking so much more...even mimicking us. We are just so blessed and ecstatic to see all these changes on a daily basis. We continue to thank God everyday for our little thriving miracle.

I will post pictures tomorrow of our road trip home and Jackson! Thanks for checking in and the continued prayers for Jackson's recovery!

Jackson's last hug and "goodbye" to his favorite therapist...

Our last night here!

First of all, I am happy to say that my new beautiful, baby niece, Emma Claire Wyss, arrived all safe and healthy today! She was born at 4:00 am and weighed 7 lbs. 3 oz., 20 inches long. We are so happy for Molly and Dave in welcoming their first baby! I know they are going to be incredible parents! We can't wait to see lil' Emma on Saturday in St. Louis.

Jackson and I are so excited to be heading home! We are all packed and ready to go tomorrow after therapy. My sister, Maggie arrives about 1:45 and then will come to the hospital. We will probably get on the road by 4 pm and travel for a few hours.

Jack has been great since my last post. We have not had any more crazy events. I really pray that was a one time occurrence. We had the same nurse last night that was there when it happened, and she said she will never forget Jackson! ;-) All the nurses, therapists, doctors, residents...are so good to him and are all sad to see him leaving. (even though it's a good thing.)

Dr. Chugani came in for his last visit yesterday to say goodbye, because he was heading out of town. He thinks Jackson looks great and is so pleased with his progress to date. We will return for a follow up visit in 6 months, but will keep in touch between now and then. We are so appreciative to Michigan Children's hospital and Chugani's team for the huge role that have played in the healing of our son. Our entire stay has been top notch...(well except for the food.) The staff is caring, professional, and their attentiveness is unmatched.

What a long road it has been for Jackson. Definitely a roller coaster of events and emotions, but we are so thankful for the end results. We do have a long road ahead with recovery and catching up, but I believe that Jackson will achieve greatness! He already has! I have never been one to listen to statistics, even though I have been told time and time again by some doctors. I am a huge believer in "With God all things are possible." To me it is so important to stay positive...and never lose HOPE! (even though we have had our moments.)

Also, "thank you" simply does not convey the amount of gratitude we feel to all of our family, friends, and complete strangers who have supported and prayed for Jackson. It has been overwhelming to see so many people be so generous, kind and encouraging to us this past year. Not just during the surgery, but from the beginning when Jackson was diagnosed...there were so many wonderful people that prayed for Jackson and even placed him on their church prayer lists and kept them updated throughout his journey. We can never thank you enough! Prayer and support is what has carried us through this past year! We could not have done it without the help of others. If you have prayed, sent a message, emailed, called or checked in on us, I just want to know how much it has meant to both Tony and I. From the bottom of our hearts, we will never forget the love and support that you have given us and our son. Also, I am so not a natural "blogger," but I do appreciate you visiting Jackson's journey through surgery and recovery. I decided to do this blog last minute from my friend, Tera's, suggestion. I was scared to death to really post anything about what was going to happen, because nothing was for sure. However, I knew a lot people were concerned and that if I could keep everyone updated then it would be that many more prayers going out for Jackson...so I took a "leap of faith" and am glad I did! So thank you....

I will try to post some pictures of Jackson tomorrow before we leave. I didn't get a chance to take any today. We thank God and each one of you for your prayers. We feel so blessed as we leave Detroit seizure free!

An Unexpected Phenomenon????

Weren't we just smooth sailing through rehab?!?!? Well, Jackson decided to pull a huge SCARE on me this morning. The past couple of nights he has been waking up in the middle of the night and playing in his bed for hours. I noticed he did it again last night about 3:15 am and the last time I remember seeing him awake was at 4:35 am. Well, at 6 am he gets a dose of medicine. His nurse came in to give it, and I noticed she was in the room, but was still slightly sleeping. Jackson usually takes anything down, sleep or awake, when you put it to his mouth...no problem. So the RN...started saying "Jackson...Jackson...," then asked me if he was sometimes hard to wake. This alarmed me and I told her...Never! She said, "He won't wake up." I jumped up and ran to see if he was breathing. His levels were fine. We sat him up...shook his body...everything...NOTHING! She called Rapid Response Team. I couldn't believe it...NOT AGAIN!!!! I saw the same team come in that were there the horrible night he had the Dilaudid reaction. Then I look over and Chaplin Damian is in Jackson's room again too! It was another heart wrenching moment. A nightmare!!!

They all tried waking Jackson up...still no response. The checked his pupils...they were tiny, tiny little pen dots...barely retracting. He seemed comatose. I was freaking out...he was just up playing...what happened?!?!?

They did say it was a good sign he was breathing on his own and maintaining good levels. They tried response with pain on his sternum...he moved a little but no eyes opened. Then they did a blood gas on him and all levels were perfect.

Next step...was to get a CAT scan to make sure there was no bleeding or a clot. On the way down, we went to ICU to have a Doctor look him over there to make sure. Again, no response...so he took his stethoscope and ran it as hard as he could over his sternum...Poor Baby! He opened his eyes and looked and then was back out. So still only responding to pain.

We went down to the CAT scan...had it done very fast...in a matter of 10 minutes we knew the CAT scan was normal. Thank goodness there was no bleeding or swelling.

Still did not know...everyone kept saying, "Maybe he had a seizure, and he is postictal now." Which postictal means the period following a seizure or convulsion...a state of drowsiness. (which he has never had) Even though they said during this time right after surgery, he could experience "unusual" seizures...I still didn't buy it this time! It just didn't add up, plus his pupils were teeny, tiny instead of dilated.

Then we get back to the room...it was now 7:15 am (1 hour and 15 minutes later)...we were situating him in the bed...when Jackson did this BIG stretch...and opened his Big Blue eyes with big pupils, SMILED, LAUGHED and blew BUBBLES at the nurses and doctors. It wasn't funny...even though he thought so! No one could believe it! He was his normal self.

After Neuro, Neuro Surgery and several different Doctors evaluated...they ordered medication levels (which we hadn't had in almost 2 weeks). Those came back within range. Then an EEG. I was scared to death to see what the brain reading would show, but I just knew that he didn't have a seizure. They did an hour reading....and the results came back that there were NO ACTIVE SEIZURES! Thank God! There was still some abnormal spiking in areas, but they said that is completely normal considering he just had surgery and his history. There could not be better news!!!

Now the difficult part is...whatever happened is an unexplained "phenomenon" of sorts. Dr. Chugani was supposed to be out of town until Wednesday, but happened to get an earlier flight back today. He just came up to check on Jackson and another patient without knowing anything. (Such a good Doctor) He and the other Doctors are not too concerned with this incident. Dr. Chugani has seen "100s" of different kinds of these occurrences following surgeries and they usually never happen again. There is a lot of trauma to the brain after these surgeries and the reorganization could play a role. Another Dr. and therapist said they have seen this a couple of times before too! I don't know if this "unexplained" is good or bad, but I do know I don't like what I saw and not knowing. However, all necessary tests were done and nothing came back abnormal. We pray this doesn't happen again! I have never been so happy to still be at the Detroit hospital and not at home. Having the machines with the vitals helped so much! The staff was again amazing with their response.

Of course, this happens when I am by myself! I am sure it was harder on Tony with my 5 am wake up call that Jackson wouldn't wake up and not knowing everything that was going on. Thank God that it wasn't anything more serious! I am again today counting our blessings that Jackson is still seizure free and everything is okay! What a day!!!!!!

Please pray that we have a peaceful last week in the hospital and continued recovery for Jackson!

Just me and Jack...

My Mom and Dad left for the airport at 5 am this morning, and we were sad to see them go. It was so nice having them here! We can never thank them enough for their support and spending so many days in the hospital helping us through this time in our lives.

I felt a little lonesome this morning, however, Jackson cheered me up fast with his happy self. In fact, he has kept me pretty busy all day. I am just now able to sit down and post. It has been hectic, but only 4 days and 4 more nights until we head home! We can do it!

We had a great weekend. Yesterday we went shopping at this huge mall. Since my husband, Tony, complained that Jackson was in the same shirt 2 blogs apart...I decided to cease the opportunity! It was good therapy for me! ;-)

Then we went to the Detroit Zoo to an event called "Zoo Boo." It was really festive and a lot of the kids dressed up in costumes. There were elaborate Halloween decorations, treat stops and fun activities throughout. I felt bad for Jackson, because all the kids had their costumes on...and his new turtle costume is in Texas. It was also FREEZING...but well worth it.

Today was back to usual with therapy. During his Occupational therapy, the therapist also brought in the musical therapist. Jackson had a good time with the singing, music instruments and her guitar playing. His favorite song was "When the Ants go Marching One by One...," and this girl was all into it! He was laughing up a storm and playing with the bells. At the same time, the clinical manager had a photographer taking pics of Jackson during his therapy for an exhibit for the Michigan Children's Rehabilitation unit. She is going to send me the pictures in the mail. He had quite the stimulation with everything.

He did great in all of his classes today...stronger and stronger each day! It is amazing to watch. Attached is a picture of him at the Zoo and standing behind a bench in Physical Therapy...with very little assistance!