Merry Christmas

This month has just flown by...the holidays have been busy. However, we have enjoyed this Christmas so much with Jackson. What a blessing...what a miracle! We are filled with gratitude. I will post more of an update after the weekend, when things settle down...but wanted to share some photos of Jack. We wish everyone a very Merry Christmas!!!

1st Snow

A few pictures of Jackson tonight in the snow in Houston...his first. It was actually snowing earlier today and we took some pictures, but the snow flakes did not show up. So we went for round two tonight and there is a lot of snow on the ground.

Jackson is doing great. We think this past weekend he went through another "organization." (that's what we call it) He was tired a lot at the end of last week...and then all the sudden it was like another big developmental change. You could just see a huge difference...like everything was connecting even more. He has been using his hands so much more...clapping all the time, feeding himself, using a pincer grasp in a coordinated manner to pick up small objects. He is using his left hand so much more...although...he still favors his right. He is also talking a lot too.

We did get his vision tested finally..and it was confirmed that he does have a weakness in the peripheral vision on his left due to the surgery. It can be overcome by just retraining the muscle to overcome any weakness. So bringing toys around from that side...getting him to notice them. Also, the Doctor recommended getting him some glasses to see things better up close. He sees great from distances....and he does see up close...he just doesn't have a long attention span with books or smaller objects. The doctor put far-sighted lenses over his eyes and he really perked up and concentrated on things longer up close. She wrote a prescription for glasses for him to wear during therapy to see if it makes a big difference. This is also something that he should not have to wear all the time.

We did get his holiday card picture this week. I had fun taking his picture by the Christmas tree. He was playing with all the ornaments, pulling the ribbon off the tree...it was cute.

Such a blessing to have Jackson continuing to do so well! Thanks for checking in on him and your continued prayers. We so appreciate it!

Pictures

Some random pics over the past week.....

Jack and his turkey

Happy Thanksgiving

Today has been an incredible day to share our gratitude and thankfulness for so much in our lives with our family and each other. Thanksgiving has never been more special. We thank God for the gifts of life, love, joy, and health. And for the HEALING in our sweet, Jackson.

Jackson is 56 days seizure free! Amazing...we don't take one day for granted!

This past week we have all been a little under the weather. Jackson especially. He has been sick since last Friday with upper respiratory infection and ear infection in both ears. He had high fevers until Monday...now it is just a lot of chest congestion and drainage. Despite the way he feels...for the most part he has been in pretty good spirits and somewhat active. He did miss all his therapy appointments this week, but hopefully next week he will be back on track.

We had a great time with our family. We went to my cousin, Carrie and Justin's house, near my hometown of Luling. My parents, aunts, uncles and my grandmother were there too. We missed the rest of the family that were not with us, but we had a really wonderful Thanksgiving together! Carrie and Justin live on a ranch with horses, cows, donkeys, and all. So we got a few pictures of Jackson with the donkeys...while we were feeding them treats. It was cute!

Thank you for checking in on Jackson. We are especially grateful for the blessings that are priceless like our family, friends and health. We wish everyone happiness and blessings- at Thanksgiving and always!

Ready to go...

Not too much to report, but all good news. Jackson continues to do so well and getting stronger each day. He really wants to move, but is still trying to figure it all out. Almost on all fours...so close. He really pulls his legs up underneath and pushes up. The increase in therapy is really making a difference. Everyone can tell he is frustrated and wants to go. We are also working on sitting to standing. He does wear his AFOs (ankle foot orthodics) to help give him a little support in standing and walking. He still has a little more of a weakness on his left foot.

Jackson is going through some separation anxiety. He started this at my parents house last week. He wants me or his daddy to be in the room with him most of the time, playing with him or he even wakes up wanting attention from us. Before he was much more independent. We are working through this new "milestone", but at the same time we are so glad he is experiencing this. Before he had no "loyalty," and would go to anyone. Which he still has that same personality, but you can tell a difference if we are not around.

We are really looking forward to the holidays and seeing family. We have so much to be "thankful" for this Thanksgiving.

34 Days - Seizure Free

This past Monday was a month since Jackson's surgery! It's hard to believe how much has happened in those 4 weeks. Originally, Jack's surgery was scheduled for a later day in October. There was a cancellation the week that we ended up having it, because another child gained seizure freedom and didn't need the surgery after all. Jackson was first on the cancellation list. It was a tough decision to move it up...but we are so glad we did. We spared him 3 weeks of seizures...which is a good thing! Plus the date, October 3rd...is a very special to us. We lost our first child when I was 20 weeks on Mother's Day 2006. Ella's actual due date was October 3rd. We felt a sense of peace about our decision when we finally moved to that date. There will always be a huge empty space in our hearts for the daughter we lost, but we are so thankful for Jackson. We believe our little girl is Jackson's guardian angel...watching over him and his recovery!

We are still moving along with therapy treatments in Houston. His evaluations are finished ,except for Speech and Vision will be at the end of the month. He will be receiving Physical therapy 4 times a month at home....so once a week. We will go to Private therapy - 3 times a week for Occupational therapy. So you see what my job is...I enjoy it though. I really love learning the techniques and working/playing with Jackson...watching each new connection or development he is doing. We are also going to start a music/activity class...which I think will be great for him to be around other kids. He really likes watching other little ones...when we walk around the neighborhood or just out and about...he gets so excited when he sees another child.

Jack is now 35 inches...that is almost 3 feet. Where did my baby go?!? He is a big toddler. He is 18 1/2 months...but was a 28 weeker. There is nothing preemie size about this child. He is so long now...I really think he grew a foot in Detroit.

His molars have FINALLY peaked through! He had been so fussy, and I was calling everyone to get their opinion of Jackson's fussiness. It is sometimes hard to think it is something so simple and "normal" as teething, when you have had so much happen. However, I can handle molars and related fussiness any day of the week! Now he is much better though...thank goodness he is loving his teething toys.

The camera is out of batteries, and the charger is with my mom in St. Louis. We are actually going to my parents on Monday to get all of our belongings that are still there. In the meantime, I might do some recording of my wild man. He has so much energy now...and is all boy. I think once he is crawling, walking, mobile...he's going to be a rowdy one. He is so rough and strong right now...trying to fly out of my arms.

All things are still going well. We appreciate each "ordinary" day! We are so thankful....

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!

Still going strong...

Even though he looks innocent enough in the picture...his PJs say it all! (Not that we are complaining)

Two weeks now of seizure freedom!! We could not be more thankful. Jack is still making new small connections every day, and we enjoy and appreciate watching each one of them. What a blessing to see the healing God has done for our little boy who suffered from more than 100 seizures a day!

We are ready for the weekend, which means another outing! We live for those breaks now.

Mr. Social

Jackson has a new found love for people and faces. He is interacting with everyone in therapy. He really likes watching the other kids (all in their business) and even "flirts" with his therapists. His reward at the end of each session is that he can "snuggle" with them. That is his favorite part!

Jack is even showing new emotions with his face and gestures. He pouted for the 1st time. (i know that is weird to most, but if he was unhappy before he would just cry). This time...the PT was making him do a side sitting position for a really long time and he stuck his bottom lip way out and he had the BIGGEST puppy dog eyes. He just kept getting sadder and sadder with his chin down, until she gave in. It was pretty funny!

All this work seems to be helping him sleep through the night so much better....I am sure no seizures has much to do with it too! The last time he slept through the night was December 2007. It has been awhile, but we are almost there!

Staying longer...

Jackson is still doing great. He was able to get his incision sutures removed yesterday. He did not even cry out once the whole time...and there were so many to cut and pull! His incision is healing nicely.

He has had another 2 full days of therapy and seems to be adjusting to the long schedule. In therapy he is already doing some things that he hasn't done before, and some things we are still working to get back. It all has to do with his temporary left sided weakness from the surgery, but he is picking up more and more each day.

Dr. Chugani and the doctor over the rehabilitation unit would like Jackson to stay longer in inpatient therapy. They feel this is a crucial time for Jackson and that if he could get intense therapy longer, then he would benefit even more. If we were to go home now, he would not be able to get as much therapy in a day or week in Houston. So, we will be staying until Friday, October 24th! It is longer than we anticipated!!!...but we will do whatever is best for Jackson.

This new date means my Mom and Dad will leave me on Monday. My Mom will go to St. Louis to be with my younger sister, Molly who is due next week! She is having her first baby...and we can't wait for Emma to arrive. My Dad will fly back to Austin. Originally, he was going to drive back with me, but since we are staying longer he must get back to work. So my older sister, Maggie, is flying up on the 24th and will drive back to Texas with Jack and I. Should be a road trip to remember with the two of us! We will stop again in St. Louis to see our new baby niece and Jack's new cousin on the way. ;-)

Yesterday, we had the pleasure of meeting another family here in Detroit for testing to see if their daughter is a surgical candidate. They actually live in the St. Louis area...not too far from Molly and Dave. Sophie is 3 years old and is a precious little girl. She has been able to develop really well and do so much despite having Infantile Spasms, but she still has many seizures a day! Please keep this little one and her family in your prayers too. Please pray that they receive the answers they hope from the testing for surgical candidacy.

We continue to hope and pray for Jackson's complete recovery. Thank you for checking in on his progress!

Jack's 1st Outing

My mom, dad, Jack and I left the hospital for Jack's first outing post surgery. Since being here, we have heard all the nurses talk about the Cider Mills....and how we need to go. So we decided to go to the town of Franklin. The Cider Mills are a tradition in Michigan this time of year. Fresh apple everything, fall festival booths, lots of kid activities, etc. Everyone brags about the cider and doughnuts...which we had never heard of this combination before. However, it was really good! Detroit gets a bad rap, but the suburb areas are absolutely beautiful. Franklin was the most picturesque town. The leaves were turning bright colors, great weather...we could not ask for a better day.

Jackson loved being outdoors...he always has. He really had fun on the carriage ride through the town. The driver went pretty fast...so he was bouncing all over. Then we drove through Bloomfield Hills to Birmingham for a late lunch...which is another great area.

After a full day, Jackson still had so much energy last night. In fact, he was a little WILD. Not that I am complaining, but he far exceeded our expectations of his 1st day out of the hospital. I thought for sure he would go to sleep early when we got home, but he was up until 10:30 last night bright eyed and ready to do more. We continue to enjoy our little resilient miracle!

More Pictures from the Cider Mill

and a few more...

Jack's Papoo carrying him...he was a little tired as you can see when we made it back to the car, but it didn't last long!

New Spark

Today is even better than yesterday! Still all smiles. Jack smiles so much more than he used to and there is this new "light" behind his eyes. It's just different..in a good way. A new sense of awareness...a new perspective. It is so amazing to see already. We have been seeing small differences in him everyday, and the doctors say the "big" changes will hopefully come in a couple of months. It is just so gratifying to see these small changes (which are HUGE to us) so far!

We can really tell he is feeling so much better. His head doesn't seem to bother him anymore. He did great in therapy. We are so glad he is doing this inpatient rehab, because I know that if it was just me I would not push him like they do at this point.

Today is also a special day because it is our 5th Wedding Anniversary...and even though Tony and I are apart, we still have reason to celebrate. We could not ask for a better gift.

Here are a few pictures of Jackson at breakfast, lunch and therapy today. (sorry- my pics are a little blurry) Thank you for keeping Jackson in your prayers!