Jackson started walking a few weeks ago!!! He is still not the best "walker"...early stages, but is getting more and more confident. He can turn corners, go through doorways, and goes room to room. It is all he wants to do now! We are so very proud of him accomplishing this huge milestone! I remember a little over a year ago...I wondered in the back of my mind if he would ever be able to sit on his own...and he did. Then a few months ago, I posted that I thought he would be walking by the end of the year. However, at Thanksgiving I wasn't sure if it would happen! I told him then...that is what I wanted for Christmas. So our wish came early and he is walking! My back is really thankful too as he weighs a whopping 41 1/2 pounds now! I will post a lengthy (much over due) update post holiday! We want to wish everyone a very Merry Christmas!
Thank you for checking in on Jackson and keeping him in your thoughts and prayers!
Thursday, December 24, 2009
Friday, November 6, 2009
Prayers for Gavin and family
My heart is breaking for another family. I have followed their blog for a little over a year now...I don't always comment, but there has not been a day that goes by that I don't think about what they are going through. I have been touched by sweet Gavin. Gavin has mitochondrial disease and has been such a fighter. His parents are amazingly strong and are facing the unimaginable today. Please say extra prayers for this precious child and his family. I am just at a loss for words and pray for peace for Gavin and the Owen's family.
gavinowens.blogspot.com
gavinowens.blogspot.com
Thursday, November 5, 2009
No more viruses please!
Jackson is doing better! We have had a crazy couple of weeks. He was sick with another virus for 7 days and he was out of school for 5 days. We thought it was H1N1, but he tested negative. He missed Halloween altogether! I was so sad for him, because his class had a party and went trick-or-treating and he totally missed out! We did force him to get into costume just for pictures, but he wasn't too happy about putting on the tiger costume while sick.
We were so worried, because all he did for 6 days straight was sleep all day. However, he has snapped out of it now and getting back to his normal self.
Once he was better, on Tuesday night we had a scare. He climbed up on our dining chair and before we could get to him he jumped off and tried to land but he fell and hit his forehead on the floor. It was so scary and we felt like the worst parents for not getting to him in time. He had this HUGE whelp on his forehead and cried and cried. We called the pediatrician and she recommended us take him to Texas Childrens Emergency room for a Cat Scan to make sure there was no internal bleeding. So poor Jackson had to go the ER with all the swine flu kids and wait from 7pm until 3 am....luckily everything was fine, but it was quite the scare.
On the seizure front...it's better. We are seeing less as we go up on the Keppra. Last week we had his levels checked, they were STILL not to a therapeutic level and I think we are 10 weeks into treatment. Why does it take so long?!?!? Good news we are seeing improvement. However, with being on a high dose of Depakote, high dose of Pheno, and getting to a high dose of Keppra pretty much equals dosed up, sleepy child. We don't like that at all! I can't stand it...it reminds me of the way he was before surgery. So tired all the time! His school even was concerned, so FINALLY his neuro is allowing us to wean the Pheno. Thank goodness! I know we will see a huge difference when he is off that medication. I guess we have to do a slow wean over 2 months as he can have withdrawl symptoms coming off. I just pray everything goes smoothly. Even though we have just started the wean down, he has already had much more energy.
Jackson is also doing well in school. We get daily reports telling us what he did or enjoyed, etc. He is now sitting around the table with all the other kids and stays in his chair when he is supposed to! Since starting school he is almost self feeding with a spoon and fork on his own...he needs very little assistance. He has been feeding himself with his fingers for a long time, but would always throw his spoon when I tried it with him. However, some of our therapists that have worked with Jackson for a very long time, now go to the school to see him. A few have commented that they do not think he is getting enough one-on-one throughout the day. They think he could be more challenged than he is. In the month of October, he has come home with so much art work...(I have 19 pieces of elaborate Fall/Halloween art...a little excessive for 1 month). While I absolutely love the art and think it's good therapy, I just don't want to be paying for a ton of time spent on art work that Jackson may slightly help with...I would rather them work on him holding a crayon and coloring on his own first. Good thing is the school is having a conference day tomorrow so we can go over our expectations and theirs. We will also get a better understanding of how they incorporate his goals into his day. Now I do have to say they are good about addressing his behavioral issues and staying on top of it and making sure we are all consistent with our reactions. We do really think this school is good for him and his teacher is so caring, but we just want to make sure everyone is on the same page. Tomorrow is the parent/teacher conference so I guess we will!
Jackson is still taking more and more steps on his own. Getting more confident in his walking. Cognitively he is doing so much better too. He really understands more and more. He also loves giving high-fives now and playing patty cake.
We were so worried, because all he did for 6 days straight was sleep all day. However, he has snapped out of it now and getting back to his normal self.
Once he was better, on Tuesday night we had a scare. He climbed up on our dining chair and before we could get to him he jumped off and tried to land but he fell and hit his forehead on the floor. It was so scary and we felt like the worst parents for not getting to him in time. He had this HUGE whelp on his forehead and cried and cried. We called the pediatrician and she recommended us take him to Texas Childrens Emergency room for a Cat Scan to make sure there was no internal bleeding. So poor Jackson had to go the ER with all the swine flu kids and wait from 7pm until 3 am....luckily everything was fine, but it was quite the scare.
On the seizure front...it's better. We are seeing less as we go up on the Keppra. Last week we had his levels checked, they were STILL not to a therapeutic level and I think we are 10 weeks into treatment. Why does it take so long?!?!? Good news we are seeing improvement. However, with being on a high dose of Depakote, high dose of Pheno, and getting to a high dose of Keppra pretty much equals dosed up, sleepy child. We don't like that at all! I can't stand it...it reminds me of the way he was before surgery. So tired all the time! His school even was concerned, so FINALLY his neuro is allowing us to wean the Pheno. Thank goodness! I know we will see a huge difference when he is off that medication. I guess we have to do a slow wean over 2 months as he can have withdrawl symptoms coming off. I just pray everything goes smoothly. Even though we have just started the wean down, he has already had much more energy.
Jackson is also doing well in school. We get daily reports telling us what he did or enjoyed, etc. He is now sitting around the table with all the other kids and stays in his chair when he is supposed to! Since starting school he is almost self feeding with a spoon and fork on his own...he needs very little assistance. He has been feeding himself with his fingers for a long time, but would always throw his spoon when I tried it with him. However, some of our therapists that have worked with Jackson for a very long time, now go to the school to see him. A few have commented that they do not think he is getting enough one-on-one throughout the day. They think he could be more challenged than he is. In the month of October, he has come home with so much art work...(I have 19 pieces of elaborate Fall/Halloween art...a little excessive for 1 month). While I absolutely love the art and think it's good therapy, I just don't want to be paying for a ton of time spent on art work that Jackson may slightly help with...I would rather them work on him holding a crayon and coloring on his own first. Good thing is the school is having a conference day tomorrow so we can go over our expectations and theirs. We will also get a better understanding of how they incorporate his goals into his day. Now I do have to say they are good about addressing his behavioral issues and staying on top of it and making sure we are all consistent with our reactions. We do really think this school is good for him and his teacher is so caring, but we just want to make sure everyone is on the same page. Tomorrow is the parent/teacher conference so I guess we will!
Jackson is still taking more and more steps on his own. Getting more confident in his walking. Cognitively he is doing so much better too. He really understands more and more. He also loves giving high-fives now and playing patty cake.
Saturday, October 3, 2009
One Year!
Today, October 3rd, marks one year since the day of Jackson's subtotal hemispherectomy which changed his life completely...for the better! I can't believe it's been a year, then again, it feels like 10 years! We have a lot to be grateful for over the past year, and even though we can't say he went a year being seizure free completely, the surgery did rid him of Infantile Spasms and has allowed him to develop. We know it will be a long road ahead, but we continue to be optimistic that Jackson will have a life that does not involve seizures...maybe medication...but no seizures! ;-)
I meant to post Jack's most recent update before today, but again it didn't quite happen so now I am posting everything together. It's a long one! There have been some changes with Jackson that have been good...and some NOT so good! I am really sorry to those who only keep up with Jackson through the blog. We have been extremely busy, but honestly, I have been a little "down" and have not been motivated to post. So I apologize, but now am getting back on track!
We will start with the not so good...so after correcting our last relapse in May and becoming seizure free again June 23rd. We were great for 2 more months...seizure free and enjoying our summer. Then on our trip to Missouri, yes the pictures from the last post where Jackson looks so happy, he got a really bad virus. It started on the way with a rash that looked like the chicken pox (but not) and escalated in Kansas City. We actually first went to an urgent care in St. Louis while visiting my sister, but when we got to my in-laws in KC...that is when Jackson got really sick. The first morning there...Jackson was still sleeping past 8 am, which doesn't happen. I went to wake him up and he would not arouse. I felt him and he was burning up. I took his temperature and it first read 106.1. I was freaking! Then I took it again and it just read "hi" which equals on the box "above 107." We jumped in the car and headed to KC Mercy Children's as fast as we could. I was so scared that he was going to have a "big" seizure from the fever, which he has never had, but you hear stories and his fever has never been that high. The team at the hospital ran a bunch of tests and diagnosed him with a bad viral infection. They first thought he had a bacterial infection and were going to keep us in the hospital, but they ended up giving him a shot of antibiotics to help with the ear infection he had too (1 in each leg) and sent us home. We had to return the next day to make sure all was well. Anyway, after this virus hit, I started to notice when Jackson was waking up, he would lay and look around for awhile before getting up. I thought this was strange, because usually he just pops up and gets going. So I called his Neuro and he told me he wasn't too concerned and it could be a change in Jackson and the way he wakes up, as if he is getting his bearings or something. Well, me being his mom and knowing my son, it just did not sit right with me. I felt like the virus had changed something. So then I video taped Jackson and sent it to Dr. Chugani in Detroit. Within minutes, of course, Dr. Chugani emails me back and says it looks like a "complex partial seizure" and to have our Neuro do a Video EEG to diagnose for sure. He goes on to tell me what meds to try, etc. I was so upset that our doctor in Houston would not take us seriously over this, but as soon as I told him Chugani reviewed Jackson's "episode" and what he thought...he had us in for a 48 hour EEG. Then we confirmed that Jack is in fact having this "complex partial seizure" only when he wakes up. I was devastated, but knew that it was something. We had just had an in house EEG in July and everything was fine!!!! Now another type of seizure. Our neuro told us that these illnesses and high fever can set off seizures. Another setback! Do these kids need to live in bubbles or what? I just didn't realize how easily these things can be triggered. So now we are treating the seizures with Keppra. These seizures are coming from his left side (opposite of surgery) same exact little area. It is difficult too, because Dr. Chugani says try, Dilantin or Trileptel...and my neuro here refuses both based off Jack's EEG. The team here wants to try Keppra. We are still on a very small dose of Keppra, so we don't know if it is doing any good yet. His level when checked last week was 6 and he needs to be 20 - 40 to be therapeutic. Depakote is still doing good for Jack, but that level dropped from 91 to 38 too with the virus. It is really weird. So we have to get Depakote back to a higher level. Now, one good thing, despite this onset of seizures, his overall baseline EEG looks dramatically improved from his recent at home EEG. Even though he was seizure free then, he had more abnormal spiking on that EEG than the one most recent in the hospital. It looks like the Depakote is helping to change his EEGs which is good. The plan is, once we go up on the Keppra, we will come off the phenobarb. Then if the Keppra is not doing it's job, we will try something else. I am really hoping we can get things back under control quickly like the last time.
**Sorry I just reread that paragraph and it's a little detailed so unless you are familiar with seizures and meds it is probably hard to follow!**
Now the GOOD changes...Despite this new setback, Jackson is doing well. He continues to make milestones. He is a climber. He loves to climb everything...on chairs, on the top of the couch, on his high chair and wants to stand on everything. He is so fast that I have to be on top of him at all times! His walking has improved greatly, still not independent but he walks holding onto our hand needing very little support. He still takes a few steps on his own, but nothing lengthy yet. If he could just get his balance a little stronger, his core, he will be there! Our goal is to have him walking by the end of the year and we think he will! He is now in a toddler bed because he learned to climb out of his crib. It has been interesting transitioning him, because if he wakes in the middle of the night he loves to get out and play with his toys. We slept a lot more when he was trapped in his bed! He is also really interactive and loves to explore everything. He is not talking yet, besides mama or dada, but makes really good sounds and mimics and talks back and forth with me in his own language. He loves coughing sounds too...which is strange! It makes him laugh so hard. He will even do a fake sneeze on que too..if you tell him to. He definitely is starting to respond to us, understanding simple things that we tell him to do and he responds by doing it.
One of the biggest changes is Jackson is now going to school! (so much for keeping him in a bubble!)
Jackson has come a LONG way this past year, but we just felt the therapy that he was getting each week was not enough. He really needs more structure and focus, plus the social interaction with other kids. He also has some behavioral issues and I would rather have them corrected early if possible. He can start the PPCD (preschool program for children with disabilites) in our school district when he is 3, but after looking at private schools we felt that this would be great for him now to get the focus and structure early, and our hope is that one day he can transition into a typical classroom. This school is a special needs school called The Arbor and has a very good reputation. We went on a tour and had Jackson evaluated. Before they met him, the team thought he would fit in their youngest class, which are 2 years olds and younger. However, when they met Jackson and saw how big he was and strong...they quickly reevaluated their thoughts. He did meet with 3 different teachers, the director and the behavior analyst. They have Jackson in the toddler class which we think it is a great fit for him. There are 6 kids total in the class. 1 head teacher and 2 assistants, plus volunteers. The ratio is 2 kids to 1 teacher, but a lot of the time the kids get one on one. Most of the kids in the class are all a little more advanced than Jackson in most areas I would say. For instance, they all walk independently and they seem to focus more on what they are doing. Most of the kids will sit in a chair at a table and work or play with something for awhile. However, in comparison, Jackson would not stay long sitting independently in the chair working on his goal, he would be climbing on top of the table. So they have him him more in a secured desk to where he cannot get out. (now this is only for certain times of the day) I think having most the kids a little more advanced will help Jackson learn from them. He really fits in well with class, and you can tell he is so excited to go. He smiles and waves his hands as soon as we hit the steps. His teacher says he loves circle time with singing...loves the playground and he has been doing well on all his goals. They have free play too with all the kids in the classroom. Jackson tends to pull hair and bite (his behavioral issues.) He doesn't mean it to be "mean," it is more sensory or when he is excited or frustrated. He has already been better with that in the 2 weeks he has been there. The schools goes by the Carolina Curriculum which covers five developmental domains: cognition, communication, social adaptation, fine motor, and gross motor. They are constantly assessed and have individual goals in each of these areas daily. They use Applied Behavioral Analysis too for their goals, which I think Jackson will really benefit from. We plan on keeping him at this school at least until he is 3, maybe a year, but no longer. We are hoping it will give him the jump start he needs, then he can go into the PPCD program at school. They also have therapy at this school, so he can get private Occupational, Physical, and Speech therapy. His vision teacher through ECI goes to see him at the school as well. Jackson goes from 9 am - 2:30 pm daily, Monday - Friday. It has been quite the adjustment for me! I miss my little buddy, but I think it is good for both of us. When he comes home, it's nice because I feel like I can just be his mommy...we can just play and be together. Before, I was constantly running from this therapy to that therapy, to this appointment...working on things with him all day...it made me feel more like his therapist than a mom. It is a nice balance.
Below is pictures of Jackson's first art work at school for September!
The teacher traced his hands and he helped "plant" the hands on the tree.
Here he finger painted little dots on the tree. I noticed one day when I picked him up he had brown stuff on his elbow and wrist. I was a little upset because I thought they had given him chocolate ;-) but come to find out it was finger paint.
Also, in case you didn't notice in the above picture, Jackson's curly "fro" has been slightly tamed. He had his first haircut right before school! (well besides when they shaved half his head for surgery...but that doesn't count) It was quite the adventure! We went to Kool Cuts for kids. Unfortunately, we chose to go at 6 pm...not the best time and place to go while interfering with Jack's dinner. He sat in a red car and we put Bob the Builder on...but he just cried. He did not like the lady cutting his hair! By the time we left, I didn't either. I guess I have to give her props, because he is not the easiest kid to give a hair cut to, but I think I could have done the same. The front looked great...the back is another story. It will grow. He is a cutie anyway!
before
during
after...but not a good picture to show off the new cut.
We so wish today we could say Jackson was completely seizure free. It's frustrating and difficult, and this setback really hit us harder because it happened when he was sick. It just concerns us that what if he is at risk for a relapse every time he is sick? He has been sick before, but never that high of a fever with a rash. I feel really guilty and selfish sometimes, because all I want is his seizure freedom. Then when Jackson is seizure free, I start focusing more on his development and what he is doing and what he is not doing. It is always something. I have always been so grateful for every day that he has had with no seizures, but it is hard not to want the most for your child. I look at Jackson, and can see how far he has come. For those of you who don't know, a year ago, when he had surgery, he could not sit up on his own, he would barely use his hands at all, could not hold his own bottle, could not clap his hands, he rarely laughed, he would not bear weight though his arms...(i could go on, but just to name a few)...he basically had seizures all the time from Infantile Spasms that really effected his development. Now, he is a different child!!!! God has blessed us immensely! Even though he has accomplished a lot, I also see this long road ahead. It is scary thinking about it sometimes, the unknown, but my heart tells me that he is going to be okay. Something inside says he will overcome so much. We are optimistic this is another bump in the road that will be corrected again. Hopefully another medication adjustment. Regardless, October 3rd, will forever be a day that has changed our lives and Jackson's life for the better.
I meant to post Jack's most recent update before today, but again it didn't quite happen so now I am posting everything together. It's a long one! There have been some changes with Jackson that have been good...and some NOT so good! I am really sorry to those who only keep up with Jackson through the blog. We have been extremely busy, but honestly, I have been a little "down" and have not been motivated to post. So I apologize, but now am getting back on track!
We will start with the not so good...so after correcting our last relapse in May and becoming seizure free again June 23rd. We were great for 2 more months...seizure free and enjoying our summer. Then on our trip to Missouri, yes the pictures from the last post where Jackson looks so happy, he got a really bad virus. It started on the way with a rash that looked like the chicken pox (but not) and escalated in Kansas City. We actually first went to an urgent care in St. Louis while visiting my sister, but when we got to my in-laws in KC...that is when Jackson got really sick. The first morning there...Jackson was still sleeping past 8 am, which doesn't happen. I went to wake him up and he would not arouse. I felt him and he was burning up. I took his temperature and it first read 106.1. I was freaking! Then I took it again and it just read "hi" which equals on the box "above 107." We jumped in the car and headed to KC Mercy Children's as fast as we could. I was so scared that he was going to have a "big" seizure from the fever, which he has never had, but you hear stories and his fever has never been that high. The team at the hospital ran a bunch of tests and diagnosed him with a bad viral infection. They first thought he had a bacterial infection and were going to keep us in the hospital, but they ended up giving him a shot of antibiotics to help with the ear infection he had too (1 in each leg) and sent us home. We had to return the next day to make sure all was well. Anyway, after this virus hit, I started to notice when Jackson was waking up, he would lay and look around for awhile before getting up. I thought this was strange, because usually he just pops up and gets going. So I called his Neuro and he told me he wasn't too concerned and it could be a change in Jackson and the way he wakes up, as if he is getting his bearings or something. Well, me being his mom and knowing my son, it just did not sit right with me. I felt like the virus had changed something. So then I video taped Jackson and sent it to Dr. Chugani in Detroit. Within minutes, of course, Dr. Chugani emails me back and says it looks like a "complex partial seizure" and to have our Neuro do a Video EEG to diagnose for sure. He goes on to tell me what meds to try, etc. I was so upset that our doctor in Houston would not take us seriously over this, but as soon as I told him Chugani reviewed Jackson's "episode" and what he thought...he had us in for a 48 hour EEG. Then we confirmed that Jack is in fact having this "complex partial seizure" only when he wakes up. I was devastated, but knew that it was something. We had just had an in house EEG in July and everything was fine!!!! Now another type of seizure. Our neuro told us that these illnesses and high fever can set off seizures. Another setback! Do these kids need to live in bubbles or what? I just didn't realize how easily these things can be triggered. So now we are treating the seizures with Keppra. These seizures are coming from his left side (opposite of surgery) same exact little area. It is difficult too, because Dr. Chugani says try, Dilantin or Trileptel...and my neuro here refuses both based off Jack's EEG. The team here wants to try Keppra. We are still on a very small dose of Keppra, so we don't know if it is doing any good yet. His level when checked last week was 6 and he needs to be 20 - 40 to be therapeutic. Depakote is still doing good for Jack, but that level dropped from 91 to 38 too with the virus. It is really weird. So we have to get Depakote back to a higher level. Now, one good thing, despite this onset of seizures, his overall baseline EEG looks dramatically improved from his recent at home EEG. Even though he was seizure free then, he had more abnormal spiking on that EEG than the one most recent in the hospital. It looks like the Depakote is helping to change his EEGs which is good. The plan is, once we go up on the Keppra, we will come off the phenobarb. Then if the Keppra is not doing it's job, we will try something else. I am really hoping we can get things back under control quickly like the last time.
**Sorry I just reread that paragraph and it's a little detailed so unless you are familiar with seizures and meds it is probably hard to follow!**
Now the GOOD changes...Despite this new setback, Jackson is doing well. He continues to make milestones. He is a climber. He loves to climb everything...on chairs, on the top of the couch, on his high chair and wants to stand on everything. He is so fast that I have to be on top of him at all times! His walking has improved greatly, still not independent but he walks holding onto our hand needing very little support. He still takes a few steps on his own, but nothing lengthy yet. If he could just get his balance a little stronger, his core, he will be there! Our goal is to have him walking by the end of the year and we think he will! He is now in a toddler bed because he learned to climb out of his crib. It has been interesting transitioning him, because if he wakes in the middle of the night he loves to get out and play with his toys. We slept a lot more when he was trapped in his bed! He is also really interactive and loves to explore everything. He is not talking yet, besides mama or dada, but makes really good sounds and mimics and talks back and forth with me in his own language. He loves coughing sounds too...which is strange! It makes him laugh so hard. He will even do a fake sneeze on que too..if you tell him to. He definitely is starting to respond to us, understanding simple things that we tell him to do and he responds by doing it.
One of the biggest changes is Jackson is now going to school! (so much for keeping him in a bubble!)
Jackson has come a LONG way this past year, but we just felt the therapy that he was getting each week was not enough. He really needs more structure and focus, plus the social interaction with other kids. He also has some behavioral issues and I would rather have them corrected early if possible. He can start the PPCD (preschool program for children with disabilites) in our school district when he is 3, but after looking at private schools we felt that this would be great for him now to get the focus and structure early, and our hope is that one day he can transition into a typical classroom. This school is a special needs school called The Arbor and has a very good reputation. We went on a tour and had Jackson evaluated. Before they met him, the team thought he would fit in their youngest class, which are 2 years olds and younger. However, when they met Jackson and saw how big he was and strong...they quickly reevaluated their thoughts. He did meet with 3 different teachers, the director and the behavior analyst. They have Jackson in the toddler class which we think it is a great fit for him. There are 6 kids total in the class. 1 head teacher and 2 assistants, plus volunteers. The ratio is 2 kids to 1 teacher, but a lot of the time the kids get one on one. Most of the kids in the class are all a little more advanced than Jackson in most areas I would say. For instance, they all walk independently and they seem to focus more on what they are doing. Most of the kids will sit in a chair at a table and work or play with something for awhile. However, in comparison, Jackson would not stay long sitting independently in the chair working on his goal, he would be climbing on top of the table. So they have him him more in a secured desk to where he cannot get out. (now this is only for certain times of the day) I think having most the kids a little more advanced will help Jackson learn from them. He really fits in well with class, and you can tell he is so excited to go. He smiles and waves his hands as soon as we hit the steps. His teacher says he loves circle time with singing...loves the playground and he has been doing well on all his goals. They have free play too with all the kids in the classroom. Jackson tends to pull hair and bite (his behavioral issues.) He doesn't mean it to be "mean," it is more sensory or when he is excited or frustrated. He has already been better with that in the 2 weeks he has been there. The schools goes by the Carolina Curriculum which covers five developmental domains: cognition, communication, social adaptation, fine motor, and gross motor. They are constantly assessed and have individual goals in each of these areas daily. They use Applied Behavioral Analysis too for their goals, which I think Jackson will really benefit from. We plan on keeping him at this school at least until he is 3, maybe a year, but no longer. We are hoping it will give him the jump start he needs, then he can go into the PPCD program at school. They also have therapy at this school, so he can get private Occupational, Physical, and Speech therapy. His vision teacher through ECI goes to see him at the school as well. Jackson goes from 9 am - 2:30 pm daily, Monday - Friday. It has been quite the adjustment for me! I miss my little buddy, but I think it is good for both of us. When he comes home, it's nice because I feel like I can just be his mommy...we can just play and be together. Before, I was constantly running from this therapy to that therapy, to this appointment...working on things with him all day...it made me feel more like his therapist than a mom. It is a nice balance.
Below is pictures of Jackson's first art work at school for September!
The teacher traced his hands and he helped "plant" the hands on the tree.
Here he finger painted little dots on the tree. I noticed one day when I picked him up he had brown stuff on his elbow and wrist. I was a little upset because I thought they had given him chocolate ;-) but come to find out it was finger paint.
Also, in case you didn't notice in the above picture, Jackson's curly "fro" has been slightly tamed. He had his first haircut right before school! (well besides when they shaved half his head for surgery...but that doesn't count) It was quite the adventure! We went to Kool Cuts for kids. Unfortunately, we chose to go at 6 pm...not the best time and place to go while interfering with Jack's dinner. He sat in a red car and we put Bob the Builder on...but he just cried. He did not like the lady cutting his hair! By the time we left, I didn't either. I guess I have to give her props, because he is not the easiest kid to give a hair cut to, but I think I could have done the same. The front looked great...the back is another story. It will grow. He is a cutie anyway!
before
during
after...but not a good picture to show off the new cut.
We so wish today we could say Jackson was completely seizure free. It's frustrating and difficult, and this setback really hit us harder because it happened when he was sick. It just concerns us that what if he is at risk for a relapse every time he is sick? He has been sick before, but never that high of a fever with a rash. I feel really guilty and selfish sometimes, because all I want is his seizure freedom. Then when Jackson is seizure free, I start focusing more on his development and what he is doing and what he is not doing. It is always something. I have always been so grateful for every day that he has had with no seizures, but it is hard not to want the most for your child. I look at Jackson, and can see how far he has come. For those of you who don't know, a year ago, when he had surgery, he could not sit up on his own, he would barely use his hands at all, could not hold his own bottle, could not clap his hands, he rarely laughed, he would not bear weight though his arms...(i could go on, but just to name a few)...he basically had seizures all the time from Infantile Spasms that really effected his development. Now, he is a different child!!!! God has blessed us immensely! Even though he has accomplished a lot, I also see this long road ahead. It is scary thinking about it sometimes, the unknown, but my heart tells me that he is going to be okay. Something inside says he will overcome so much. We are optimistic this is another bump in the road that will be corrected again. Hopefully another medication adjustment. Regardless, October 3rd, will forever be a day that has changed our lives and Jackson's life for the better.
Wednesday, September 23, 2009
End of Summer Pics
I just realized it's been 2 whole months since I have posted!!! I knew it had been awhile, but where does the time go?!? We have a lot to update on Jackson. I am in the process of writing a lengthy blog update, but in the meantime here are some pictures of Jack on our recent end of summer trip to see family in Missouri.
(Sorry Jack...he was so tall he would only fit behind the "girly" flower with the pink butterflies...he loved peaking his head through.)
(All about the park at Grandma and Grandpa's in KC)
(Sorry Jack...he was so tall he would only fit behind the "girly" flower with the pink butterflies...he loved peaking his head through.)
(All about the park at Grandma and Grandpa's in KC)
Friday, July 24, 2009
Obsessed with water
These are pictures of Jackson this week before the EEG. This child loves the sink, bathtub, anything with a faucet. We now have a stool at the kitchen sink and after each meal, we walk him over and he climbs up and washes his hands. Now, I just need to get him to like having his teeth brushed!
At Home EEG
Pictures with Jackson and his head wrap. We tried to accommodate the box around his waist as best as possible. However, I have been mostly carrying it around as he moves around the house. He is trying to wash his hands, but his stool is not there for him to climb up on, so he is trying!!!
We began the EEG on Wednesday at 9:30. I was impressed with how fast the tech was able to get Jackson all hooked up. We were in the office and out with computer, video and Jackson with his head wrap in less than an hour. We made it home and as soon as I set him down, he had the entire head wrap pulled off!!!! Luckily, the leads stayed in tact, so I used 1 of the 2 additional head wraps given to secure everything again. She did not tape his skin, but at that point I decided it was the only way. So he was all taped up too. Then 15 minutes later, he begins having diarreah. Fun, fun stuff!! He still has it today, so may be taking him to the pediatrician once we get this off.
It is so much easier having the long EEGs in your home. Our circumstances were a little more difficult since we are in the process of moving out, but otherwise it is much better than being in the hospital. The only hard part has been keeping Jackson hooked up to the video. It is almost impossible unless he is sleeping. He won't stay in one area and the video monitor does not adjust that easily and is big.
Tuesday, July 14, 2009
Long Overdue
Well, before I get into everything...I have AWESOME NEWS...Jackson has been seizure free again for 21 days!!!!!!
The last time he had a seizure was on, Tuesday, June 23rd. We had the whole crazy vigabatrin wean drama...where he went from 2000 mg to 0 in the course of 5 days! We do not want to be in that situation again. I ran out of Vigabatrin on Monday, June 22nd. He got his last dose of 250 mg that evening. Tuesday was his first day to go without. I did see a slight increase in seizures to 5 total for the day. Then on Wednesday I did not see any all day! I could tell he was detoxing though...he would not sleep at all during the day. Then when he would sleep, he would wake up quickly and whimper a little. It was not at all like himself. However, that Wednesday and Thursday he was so alert and happy...laughing all the time!
Then the Vigabatrin came in the mail on Thursday...FINALLY! However, I was hoping that since Jack was already weaned and doing great that we would not have to start this medication again. I called his neuro in Houston, and even though he was seizure free he wanted to go back up and wean over the next 3 weeks! I was a little reluctant to mess with seizure freedom, so I also checked with Dr. Chugani who told me there is not right or wrong, but it is the safer way to go. They know best! So with faith, we went back to 250 mg in the am and 500 mg in the pm for a week, then 250 mg and 250 mg for a week and now we are 0 and 250 until this Thursday and then NO MORE VIGABATRIN!!! Jackson is so much more alert and happy with out this med. It is so nice to see him come off a medication and find out that he really did not need it.
Our Neuro also wants us to come off the Phenobarbital in August. Once we are off the Vigabatrin, we will wait 2 weeks then start the pheno wean. We may add something else, or we may just leave him solely on Depakote. His levels have finally reached a therapeutic level and seem to working!!! Thank goodness! It was a little scary as prior to surgery medicine never worked for Jackson, now it can! Also, our doctor is going to continue to treat his levels. This means, that as Jackson grows, if he gets his medication levels checked and they are running low, then he will increase his dose to get back to therapeutic. Before, if it was low, but he was seizure free, he would not make any changes. So this should hopefully prevent future recurrences as Jackson grows.
We will have an EEG in our house on the 22nd - 24th. This time, our Neuro, contracted a company called Digitrace. We will take Jackson in to be hooked up to the electrodes and come home with a camera and computer, etc. Then we will monitor him for 48 hours in our house and then take him back to be unhooked. Should be interesting!!! It sounds great, but what happens if something comes loose? Do I have to take him all the way to the medical center to have adjusted? Also, we sold our house rather quickly. We put it on the market a few weeks ago, and it sold before the weekend was up. We close on our house on the 24th. I don't know how I am going to handle moving, packing and watching Jackson at all times hooked up to the EEG, then get him unhooked and close on the house in the same day!?!?! Sound a little crazy? This was their only available appointment for awhile, so we took it and will make due! Everything always works out.
We are so relieved and so incredibly happy that Jackson is once again seizure free. We are just taking one day at a time and focusing on all the positives. Jack is now standing up from the floor and balancing on his own now in the standing position. The most I have seen him do this is 20 seconds. The 2nd biggest news besides the seizure freedom, is that he took 4 steps on his own on July 3rd. He went from a bench to a window, and he had his arms out to the side and balanced on those 4 steps. I could not believe it!!! My sister was with me and we were both in shock. Since, he has taken a few steps from his therapist to me on his own...but mainly he is cruising...which is much improved as well!!!
Lots of exciting things to report! Sorry it has taken me so long to update...but with the sale of the house, Jackson schedule, my work, and Tony started a new job...it has been super hectic and stressful! It's been good stress though! Hopefully, in August things will settle down a bit.
*Above is a picture of Jackson on the 4th. He is so big now!!!! Also, I have some pictures of him with his new favorite race track toy that he received recently as a gift. He loves it and you can see Jack's focus while his dad is showing him how to race the cars*
Saturday, June 20, 2009
Summer Fun
Jackson is doing better! Still not seizure free, but I think we are FINALLY getting somewhere. (I'm looking at things optimistically!!) Last I posted...he was having a couple a day...sometimes none. Well, they did get worse to where I would see at most 8 individual seizures a day. I could have missed a few, because they begin and end in the blink of an eye...but I am around him ALL the time. Now they are back to improving! Yeah!
Our neuro had Jack's medication levels checked every other week. Our doctors goal is to get the Depakote level to 50 - 100. We were at 20...then two weeks later it only increased to 30...and last week it was at 41. The Depakote level is taking forever to increase, because the other meds are breaking it down, BUT now we are finally seeing results. I am only seeing again 0-2 seizures a day...and we still have to get to 50 - 100 for therapeutic level of Depakote. I think it is a good sign. I was a little (well very) worried for awhile, because we were not seeing improvement. However, this past week has been consistently better. I hope in the next couple of weeks we have NONE again! Anyway you look at it...we so DETEST any type of seizure...infantile spasms or not.
We are experiencing a HUGE issue with Jack's Vigabatrin medication that we get from a Canadian pharmacy. This particular drug is not approved in the US. Well, I had ordered a 3 month supply in February. I went to reorder this month, and when I called the pharmacy, I was informed that they can no longer supply me Vigabatrin, because my prescribing doctor is an American doctor, not Canadian. I asked, "When did this change?" The pharmacist said, "2 months ago." She told me to call another pharmacy in Canada, in a different province that could send me the medication. However, Jackson at the time of this call was 5 days from being out of his medication completely. Normally, this pharmacy would only take 2 days to ship...because they would send it via Fed Ex. So, I ended up calling 8 new Canadian pharmacies...they all gave me the same answer, "We can ship to you, but it will take 8 - 21 days." I was freaking out! They only ship regular postal mail!!! No one could do Fed Ex or a rush. So I ordered...they did not even ship out his medication for another 2 1/2 days. It was a nightmare. However, Tera, Reagan's mom, gave me some "expired" Vigabatrin that she had and my doctor approved us taking it. In fact, I think it was once Sophie's, that Elaine had given her. ;-) Then I realized I would quickly run out of that...and Danielle, Trevor's mom, kindly sent me 10 tabs priority mail that they had left over. Thank you so much Tera and Danielle!
However, we still have no clue when this medication will actually show up and I do not have enough still if it was to take another 3 days. So, after speaking with Jack's neuro on Friday about the predictiment...he now wants to wean this drug. It is a rather fast wean...so I HOPE that Jackson has no increase in seizures and no side effects. This is what we have wanted...one less drug, but it is kind of scary at the same time. Our doctors do not think it will hurt Jackson, and that this particular drug is not necessary for him anymore. With this super fast wean, if medication does not show up, he will be off by Monday!!! I am a little nervous...
Besides all the medication drama, Jack's having a lot of fun this Summer. He loves swimming. We swim everyday...sometimes twice a day. He is taking lessons on Tuesday morning every week, but we are still on the wait list until September for the aquatic therapy program at TX Children's.
Some new things....Jack is starting to walk more now with assistance. He is cruising the furniture, windows, and doors...anything he can pull up on. He loves trying to stand up from the floor...and pushes off with his hands. It is quite scary as he is learning this maneuver while he is over 3 feet tall. Most babies learn this and they are much smaller. However, he really is good about protecting himself, but I still get nervous. He is also so much more alert and really pays attention when we are speaking to him. His concentration level is much improved, he is into books finally, and he is starting to play with his toys in a more advanced fashion. He is really observing them and trying to figure out how some of the toys work. He is still our "wild" little man, but more organized! We're so proud of him!!!
Tuesday, May 26, 2009
Prayers for Sophie
Also, in addition to prayers for Jackson, one special little girl, Sophie, (www.oursweetsophie.blogspot.com) is undergoing the same surgery Jackson had in September. However, her resection will be on the left side of her brain. Today is the first part of the surgery where the surgeon places the grids and monitors the activity the rest of the week. They will do the resection this Friday, May 29th. Sophie is such an amazing child who has done so well in development despite the infantile spasms. They tried many drugs and none were ever effective in control.
Her mom, Elaine, is just as wonderful! She is so strong and such a sweet friend. They have been so supportive to me and Jack, and even visited us when we were in the hospital in Detroit after surgery. They had come up for testing for surgical candidacy.
Elaine is 34 weeks pregnant right now!!!...away from her home outside of St. Louis...for approximately 2 weeks. Sophie was actually scheduled to have surgery in late June, but there was a cancellation and they came to Detroit in less than a weeks notice. A lot in a short amount of time! This week is going to be difficult for them, as they will not get a lot of rest and Sophie will not be too comfortable with grids. Please keep the whole Coleman family in your prayers! We pray and hope for a smooth, peaceful and successful surgery for Sophie!
Her mom, Elaine, is just as wonderful! She is so strong and such a sweet friend. They have been so supportive to me and Jack, and even visited us when we were in the hospital in Detroit after surgery. They had come up for testing for surgical candidacy.
Elaine is 34 weeks pregnant right now!!!...away from her home outside of St. Louis...for approximately 2 weeks. Sophie was actually scheduled to have surgery in late June, but there was a cancellation and they came to Detroit in less than a weeks notice. A lot in a short amount of time! This week is going to be difficult for them, as they will not get a lot of rest and Sophie will not be too comfortable with grids. Please keep the whole Coleman family in your prayers! We pray and hope for a smooth, peaceful and successful surgery for Sophie!
Monday, May 25, 2009
Update from Detroit and more...
Well, I didn't see this coming! It was not on my mind..never even crossed my mind, because we have had 7 plus glorious months of no worries!
Then...the week before we left for Detroit, I noticed Jackson "startle" out of the corner of my eye. It was so fast...seemed like the blink of an eye. I thought it was suspicious...the first thing that has even been suspicious to me since surgery. I tried to tell myself it was nothing. Then Tony saw Jackson "jump" while drinking something. Again, so quick we could not tell you exactly what we saw, but it was not sitting well with us. So, I immediately called our epileptologist here in Houston and he said Jackson's Depakote levels have been extremely low each time we have had them checked. It was 15 in February and then 20 in May. (should be 40 - 70) Before, since Jackson was not having any "episodes" there was no reason to increase his meds, however now he said to increase his Depakote, even though it could be nothing. Just to monitor him to see if we saw anymore. Dr. Chugani said the same thing.
Jackson has been pretty much the same weight since surgery...around 32 pounds. However, since his birthday, April 16th, he has gained 3 pounds and an inch in a month. So this could be a factor in effecting his levels as well.
After an EEG, one "myoclonic seizure" was captured and it is coming from the left temporal side of his brain. The actual area is called the perisylvian. A very small focus, which we knew was there prior to surgery. However, the doctors have told us all along that the major focus was on the right side, if we remove that focus, this left one could either go away or be controlled.
The last time Jackson had an EEG was February 23rd. He had some activity and abnormal spiking, but no seizures. His EEG looks pretty much the same now. The good thing is there is no sign of any hypsarrythmia (which is the chaotic brain waves associated with infantile spasms.) The seizures he is having now are different...it's a different "ball game" so to speak. They should not cause him harm in his development. The doctors are not real worried and feel it can be controlled when the med gets to a therapeutic level. We spoke to 3 different Epileptologists separately and they all have the same opinion.
One thing, Dr. Chugani mentioned is that where the focus on the left side, can affect speech and drool. Jackson does drool a lot sometimes. It goes in cycles. I always thought it was teething, but maybe it is from this area. Dr. Chugani wants us to ramp up speech therapy to twice a week to be proactive. However, after hearing Jackson, he felt better about his speech once around him.
In Detroit, Jackson had an MRI. Everything was fine and nothing looked abnormal. Dr. Chugani's team will still analyze the tracks of how the brain is organizing. I do not have this information yet.
Dr. Chugani and Ruth (his nurse) were very pleased with Jackson's progress in development. He has come such a long way since surgery. They said he looks like a different child.
As far as Jackson' s medications, both Dr. Chugani and our Epileptologist in Houston, want to wean Jackson first from the Vigabatrin, since he does not have infantile spasms and can potentially cause irreversible visual damage with long-term use. Vigabatrin is a front-line drug used for the treatment of infantile spasms. Jackson has been on this drug since last May. We order it from Canada monthly and it's quite expensive out of pocket. Then they want to wean him from Phenobarbital, which everyone knows I do not want Jackson on long-term. It can numb the brain cognitively and to me it makes Jackson more aggressive than he really is. Then they will add Clobazam...another Canadian drug. I am not familiar with this one, but Dr. Chugani said they have had great effectiveness and low side effects. So their goal is the Depakote and Clobazam.
When I first saw this happen, it really scared me and Tony. It was the whole unknown and having to relive a nightmare. I have only known the world of infantile spasms with Jackson's history of seizures. HOWEVER, after having the testing and understanding, this new road is not so bleak. Everyone is optimistic for Jackson and that it is a minor bump in the road. Just a matter of adjusting the meds. I guess if it was going to happen, it was perfect timing...right before we went to Detroit.
Since increasing the Depakote, he has improved. It does take a little while to ramp up the levels. Some days I do not see any at all. We go in this Thursday to get his levels checked again. Dr. Chugani wants us to be liberal with his 24 hour Video EEGs until we are comfortable and he is under control again.
There will be another day soon that our little fighter will be back to seizure free. I have so much hope for Jackson...that hope and belief never waivers inside of me. I realize that we do not always have the easiest road, but we will overcome this. Jackson is going to be just fine!!!!! He is still making leaps and bounds...although each day is something small...it is HUGE to us!
Also, I wanted to update that Jackson did have tubes put in his ears on Thursday, May 14th. They decided to also remove his adenoids. He did not do so great with anesthesia this time. It took him three hours to wake up and he was super fussy during that time. He seemed affected way more than when he had brain surgery, which is crazy. However, he was back to normal that evening. The ENT said they did drain a lot fluid, his adenoids were medium to severe, so hopefully he will benefit more from the tubes with his adenoids removed. We can tell he can hear better and he is more stable. They also took a blood sample for allergies while he was under. We go back for follow up mid-June.
Thanks for checking in on Jackson. We didn't want to post until we knew for sure and had all the answers. We just ask for prayers for Jackson and that the increase in Depakote takes care of these seizures!!!
Then...the week before we left for Detroit, I noticed Jackson "startle" out of the corner of my eye. It was so fast...seemed like the blink of an eye. I thought it was suspicious...the first thing that has even been suspicious to me since surgery. I tried to tell myself it was nothing. Then Tony saw Jackson "jump" while drinking something. Again, so quick we could not tell you exactly what we saw, but it was not sitting well with us. So, I immediately called our epileptologist here in Houston and he said Jackson's Depakote levels have been extremely low each time we have had them checked. It was 15 in February and then 20 in May. (should be 40 - 70) Before, since Jackson was not having any "episodes" there was no reason to increase his meds, however now he said to increase his Depakote, even though it could be nothing. Just to monitor him to see if we saw anymore. Dr. Chugani said the same thing.
Jackson has been pretty much the same weight since surgery...around 32 pounds. However, since his birthday, April 16th, he has gained 3 pounds and an inch in a month. So this could be a factor in effecting his levels as well.
After an EEG, one "myoclonic seizure" was captured and it is coming from the left temporal side of his brain. The actual area is called the perisylvian. A very small focus, which we knew was there prior to surgery. However, the doctors have told us all along that the major focus was on the right side, if we remove that focus, this left one could either go away or be controlled.
The last time Jackson had an EEG was February 23rd. He had some activity and abnormal spiking, but no seizures. His EEG looks pretty much the same now. The good thing is there is no sign of any hypsarrythmia (which is the chaotic brain waves associated with infantile spasms.) The seizures he is having now are different...it's a different "ball game" so to speak. They should not cause him harm in his development. The doctors are not real worried and feel it can be controlled when the med gets to a therapeutic level. We spoke to 3 different Epileptologists separately and they all have the same opinion.
One thing, Dr. Chugani mentioned is that where the focus on the left side, can affect speech and drool. Jackson does drool a lot sometimes. It goes in cycles. I always thought it was teething, but maybe it is from this area. Dr. Chugani wants us to ramp up speech therapy to twice a week to be proactive. However, after hearing Jackson, he felt better about his speech once around him.
In Detroit, Jackson had an MRI. Everything was fine and nothing looked abnormal. Dr. Chugani's team will still analyze the tracks of how the brain is organizing. I do not have this information yet.
Dr. Chugani and Ruth (his nurse) were very pleased with Jackson's progress in development. He has come such a long way since surgery. They said he looks like a different child.
As far as Jackson' s medications, both Dr. Chugani and our Epileptologist in Houston, want to wean Jackson first from the Vigabatrin, since he does not have infantile spasms and can potentially cause irreversible visual damage with long-term use. Vigabatrin is a front-line drug used for the treatment of infantile spasms. Jackson has been on this drug since last May. We order it from Canada monthly and it's quite expensive out of pocket. Then they want to wean him from Phenobarbital, which everyone knows I do not want Jackson on long-term. It can numb the brain cognitively and to me it makes Jackson more aggressive than he really is. Then they will add Clobazam...another Canadian drug. I am not familiar with this one, but Dr. Chugani said they have had great effectiveness and low side effects. So their goal is the Depakote and Clobazam.
When I first saw this happen, it really scared me and Tony. It was the whole unknown and having to relive a nightmare. I have only known the world of infantile spasms with Jackson's history of seizures. HOWEVER, after having the testing and understanding, this new road is not so bleak. Everyone is optimistic for Jackson and that it is a minor bump in the road. Just a matter of adjusting the meds. I guess if it was going to happen, it was perfect timing...right before we went to Detroit.
Since increasing the Depakote, he has improved. It does take a little while to ramp up the levels. Some days I do not see any at all. We go in this Thursday to get his levels checked again. Dr. Chugani wants us to be liberal with his 24 hour Video EEGs until we are comfortable and he is under control again.
There will be another day soon that our little fighter will be back to seizure free. I have so much hope for Jackson...that hope and belief never waivers inside of me. I realize that we do not always have the easiest road, but we will overcome this. Jackson is going to be just fine!!!!! He is still making leaps and bounds...although each day is something small...it is HUGE to us!
Also, I wanted to update that Jackson did have tubes put in his ears on Thursday, May 14th. They decided to also remove his adenoids. He did not do so great with anesthesia this time. It took him three hours to wake up and he was super fussy during that time. He seemed affected way more than when he had brain surgery, which is crazy. However, he was back to normal that evening. The ENT said they did drain a lot fluid, his adenoids were medium to severe, so hopefully he will benefit more from the tubes with his adenoids removed. We can tell he can hear better and he is more stable. They also took a blood sample for allergies while he was under. We go back for follow up mid-June.
Thanks for checking in on Jackson. We didn't want to post until we knew for sure and had all the answers. We just ask for prayers for Jackson and that the increase in Depakote takes care of these seizures!!!
Monday, May 4, 2009
Outdoor Fun
Jackson is enjoying playing with all his new birthday toys. I finally cleaned out his toy boxes and removed the ones that needed to go. On Sunday, he had a blast outdoors getting messy! First, I let him finger paint in his diaper. I laid a sheet on the lawn and he went to town. His body was more painted than the paper, but he did some creative art.
Then he got to wash off as he played with his water/sand table. He loves this thing! He gets wet from head to toe. Definitely a water boy! Jackson is beginning aquatic therapy, a 10 week program next month. He actually took some swimming lessons last summer. This one is more structured where they do evaluations. I will be excited to see how he does.
However, first, we have to get his ears fixed. We went to the ENT on Wednesday of last week. They did a hearing test and then we met with the doctor. Jackson is hearing at a 40 -50% loss because of the fluid behind his ear drums. So, this means he will have tubes put in on Thursday, May 14th. They will give him general anesthesia, then the doctor will poke a needle in the ear drum, drain the fluid and put the tubes in. 5 minute procedure. I feel bad that he has not been able to hear clearly all this time. His left ear is worse than the right. We are hoping that once this procedure is done, then it will help his speech, hearing and equilibrium.
Then the following week, Monday, May 18th we leave for Detroit for our follow up. We will be there through Wednesday, the 20th. Jackson will have an MRI on Tuesday at 1 pm and an EEG at some point. He will have to be sedated for the MRI too. I did check with his Neuro to make sure these two procedures (MRI and tubes) could be done so close, and he said it was okay. Then on Wednesday we will see Dr. Chugani. We are looking forward to going. Mostly, we pray for good test results for Jackson and that everything looks good and is organizing like it should! I think everyone will be pleased by how far Jackson has come in the past 7 months since surgery!
Jackson is starting to become the little explorer now. Since he has been crawling, he would pretty much just go short distances or stay in whatever little area I would have him in. Now, he is taking off from room to room and down the hallway. The first time I saw him take off, I was in the family room on the phone and I see him crawl past the couch. Then he turned the corner to go down the hallway. I was so excited...I kept peaking at him around the corner to see where he was going. I did not want him to see me or he would have turned back. I don't know where he was going, but as soon as he make it to the opening of our guest room, he saw his beloved exersaucer (that he no longer fits in) and took off to get to it. He raced over and pulled up to stand and started playing with it from the outside. It was too cute! Since then, he has gone to different areas of the home and we are loving this new development with him!
We are so thankful to God for the healing in Jackson's life and all the continued prayers for our son!
Saturday, April 18, 2009
Birthday Boy
Jackson turned 2!!!! We had a little birthday for him Thursday evening at home just Tony and I. Then today, we had a Handy Manny birthday with family and friends. Jackson really likes watching this cartoon on Disney. We had a great crowd despite the horrible storms moving through all day. It was going to be indoor/outdoor party, but with the flooding rains it was all inside. The kids ended up hitting the pinata in our garage and all turned out well! We really had a good time!!!! We thank everyone for coming and making Jackson's 2nd birthday so very special!
Unfortunately, Jack was not feeling so well at the party. He has been fighting bad ear infections. In fact, we have to go to a ENT specialist to likely get tubes placed in his ears. The pediatrician thinks it is important to get his ears corrected, in case it is affecting his speech and hearing. The appointment is next week. He seems to be feeling better tonight after dinner. Thank goodness! I was worried the past couple of days. He was not his usual happy self.
We wish our little man a very Happy Birthday! We are so proud of you....
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