Easter Pics

Here are a "few" pictures of Jackson at Easter. ;-) I couldn't pick from them, so posting them all. We had a great Easter in Austin. I have been meaning to post all week, but we were traveling, busy with birthdays and sick too! Jack just turned 2 on the Thursday, April 16th!! We had a big birthday today with our family and friends. I am going to post some more pics from the birthday, and will update more when I am rested!

6 month mark

Today is 6 months, since October 3rd, when Jackson had brain surgery!!!! 6 months of NO SEIZURES is an amazing thing!!!!! We are so proud of our little miracle man and his continued progress. I remember right after surgery being so excited over 1 day of no seizures. Believe me...that will be a memory I will never forget! It just keeps getting better and better! Such a blessing.

We took some pictures of Jackson in the Texas Bluebonnets. Not the best field around, but we live in the city. ;-) Usually, if you are on the open roads...the fields are covered.

Also, Jack is starting to crawl a little!! I have seen him do it 3 times, that I know of, in the past week. He is not at all consistent with it yet and really happens quickly when he does do it. Above is a picture of him as he crawled to a toy. We need to get a new video camera! Pictures do not quite capture all the action.

We are enjoying the last few weeks left with our 1 year old...and then he's 2 on April 16th!!! Thank you for checking in on him!

March Update

Things have been busy around here with work, therapy, family gatherings, etc. Our doctor has been out of the country the past couple of weeks, so we are still waiting on the final results and what next as far as meds. Last time I spoke to him, he thought it was reasonable to come off the phenobarbital in the next couple of months. So hopefully, we will know more about this and the trip to Detroit this week.

Jack has still been going strong in all his therapies every week. Physical, Occupational, Speech, Vision and Developmental therapies. Currently, he has Speech through ECI (Early Childhood Intervention) and I found out last week they want to discontinue seeing him since he is "eating" so well. Well, that is great, but he is not really talking like he should be? It is strange how some of the services are set up. ECI typically sees your child until the age of 3. One would assume a speech therapist would also cover language, but not in this case. She actually has been working with him on speech and word association this whole time. So, I am now looking into private therapy for speech as well. I am glad though, because we were only getting speech 2 times a month, and now we can maybe get it once a week.

Jack is still not crawling or walking. He is heading that way! He does a "half crawl" where he starts it then rolls out of it or goes to stand up. He can make it across the room so fast. He still wants to stand all the time. He is really into the DVD and cable box, speakers, anything he should not be in. He loves to pull up on our entertainment center and press all the buttons and pull the speakers. I do tell him no, but honestly I am excited he is FINALLY doing all these things...so it's hard for me to tell him no. ;-)

Jackson is really strong and fast. He definitely does not know his own strength. When around him, you have to watch some of his movements because you can easily get hurt. I actually got a bloody nose the other day when he flew back into my nose on our bed. I guess this is payback, because when I was a baby, I kicked my sister, Maggie, in the nose and she still has the lovely hump to this day. The day before, he stood up into my bottom lip and that was bruised as well. He is the sweetest, roughest boy I know!

Above are pictures of Jackson at therapy with another swing he has graduated to. This is a platform swing that he holds onto and balances himself. The therapist also spins it in circles and he tracks us with his vision. He loves it!

The other pictures are of him in his AFOs and "pantless." He would not let me put his pants back on after a diaper change. He was so determined to get to his star.

We are having so much fun with Jackson! It is amazing to see what God has done and continues to do in Jackson's life. All thanks to Him!

Fun with Cousins

We had a lot of family fun this past week. My older sister, Maggie, her husband Kyle, and their kids, Kirsten and Mason, came to Houston for Kirsten's birthday. We had a great time together. Jack went to the zoo with Mason and went bowling, shopping and out to eat with Kirsten. (he didn't actually bowl, but was in attendance.) Quite action packed for the day and a half they were here! The top pic is Jackson with Kirsten and Mason. Then Kirsten and Jack playing at the bowling alley. He adores Kirsten!

Then yesterday, my younger sister, Molly, my brother-in-law Dave and their baby girl Emma, came down from St. Louis for Spring Break. Molly and Dave had a dedication ceremony for Emma by my Uncle Allen who is a pastor in Luling, which is our hometown. It was so sweet! She is such a cutie. She is now almost 5 months! Jack was quite the character in church. He now has a new way of moving across the floor (which he did for the 1st time in the back of my Uncle's church.) He lays on his back and scoots backwards on his back and bottom with his legs. The funny part, was when his cousin, Chloe, (who is 14 months) walks over and lays next to him and starts doing it too. I wish I had my video camera. He now has carpet burns on the back of his neck from this new maneuver.

The next pictures are with Chloe, who is my cousin, Sally's daughter. She was really funny with Jackson. When we were at my grandmother's Jackson worked so hard to get to his ball, then Chloe comes over and takes it from him. He through a little fit and then looked over at her with his sad eyes for taking his ball. He got it back, but it was pretty cute! She is 9 months younger than Jackson and he is 2 feet taller! Sally and I were just like Jack and Chloe at this same age. She was always so little and I was always so tall.

The 4th picture down is my beautiful, chubby legged niece, Emma. She is so adorable. We loved seeing her yesterday. It was so neat to see her taking everything in. She also loved Jackson's ball which is in the picture with her. I wish we lived closer to see Emma more!

EEG Results

We have the preliminary results from Jackson's EEG yesterday. There was some abnormal spiking on his EEG...mainly on the right frontal lobe where they did not resect. It did look MUCH improved and wasn't a necessarily a bad reading, but there is some abnormal waves. This basically means that when abnormal spiking is present, then you are more susceptible to seizures. However, Jackson is still seizure free!!!!...and can continue to be even with the abnormal spikes. If we took away all his meds then he could be at risk for having them. (Also, just to note the "abnormal" spikes are completely different readings than when he had Infantile Spasms)

My Neuro still has to talk to Dr. Chugani in Detroit, and decide if we should wean off the Pheno at this point. So we will see what they decide. As much as I would like to have him off one of the 3 meds, I will take no seizures any day over less meds. He did say that over time it could continue to improve, or he may have some abnormal readings his whole life and still be seizure free. We just do not know at this point! He was giving me a lot of different scenarios of kids that are now grown that he has treated.

We continue to look at the positives that Jackson is almost 5 months seizure free and progressing in his development. He is a different child and continues to make up for the delays from the Infantile Spasms. Our Neuro was so pleased with Jackson and where he is today post surgery.

I will let you all know once they have the full reading and feedback from both doctors. Thank you for your concern and prayers! It means so much to us!

*A picture above of Jackson during his EEG.

Big Day Tomorrow

Jackson is pulling up to standing now! This is exciting news in our household. He is doing so well. He loves to stand up now...pulls up on us, the couch, his pack'n play, and his large toys. We are amazed at the progress he has made since surgery! Such a blessing in our lives!

Tomorrow, we go for his 1st EEG post surgery. Please pray for great results! We want NORMAL brain waves, so we can start to wean off one of the medications! That would be awesome!

My mom is going with us since Tony has to work. We meet with our Neuro at 9 am prior to the EEG. Then, the EEG is scheduled for 10 am. Our doctor could only fit us in before the test, so he will call later in the day with all the results.

I'll keep everyone posted! Thanks for checking in on him and for your continued prayers!

A Look Back At History In The Making

This is Jackson's 1st Year slide show that his Uncle Adam created for his 1st birthday. He just added it to the blog for us. Jackson was born prematurely at 28 weeks. Even though he was early and so small, he had no complications in the 9 weeks he stayed in the NICU. It shows what an amazing little fighter he was from the beginning!

His infantile spasms did not begin until 7 months and you can tell time frame as soon as you see those "steroid" cheeks! He always had chubby cheeks, but nothing like with the Prednisone and ACTH.

It is hard to believe Jackson will be 2 this April!