The End of One Journey

On August 2nd, S was officially released as a neurology patient. We went in for a final checkup and were told that he looks great. Our amazing doctor let us know that S will forever be considered her patient and we can always call with any questions or concerns. It was reassuring to hear that if something happens in the future with S' neurological issues, we are always put back in as her patient.

She asked how he was doing on physical development and mental development. We told her that he's doing great, but did add that we have been astounded with his memory capacity. While I'm fully aware that young children embrace new knowledge like a sponge, his memory seems to be abnormal. We mentioned that you can teach or tell him something one time, and he will remember it six months later (even if the subject is never brought up again). Examples of this are printed words, names, numbers, even coin amounts. She agreed that it was unusual and told us to watch him. If he continues to keep this capacity of memory, she told us to follow up with our pediatrician and have his IQ tested around the age of five. The neurologist let us know that she would be unsurprised if he turned out to be "one of those young children who figures out how to take apart a game console to see how it works before correctly reassembling it". I'm not really sure what to make of that, but I guess we will see what the future holds.

Who can say for sure what effect the seizures had on the development of his brain? We were told to expect cognitive and physical delays, and neither happened in any area of great concern. I know there is so much we still don't know about the ever changing brain, but I will always be a tad skeptical that these seizures altered his brain development - even if it was in the opposite way we expected. I will be interested to see how he progresses over the next few years. I definitely do NOT think my child is smarter than any other, so please don't hear me saying that! I just wonder sometimes at his odd capacity for memorizing things!

I will try to follow up at least twice a year on his progress. We are excited for this next chapter in our lives! A big thank you to S' amazing neurologist. You have been such a big part of our lives over the last two years, and we will be grateful forever for all you did for our little boy!

Celebrations

I want to begin this post by confessing that it becomes impossible to update a blog when you forget your username. Now that I've successfully logged in, an update is in order.

S went in for his annual neurology check up at the end of June. We were told that he looks wonderful and that this visit could have been the last. However, our neurologist wanted to see him one more time. We will go back next July for our final checkup. Provided that S stays seizure free between now and next July (which he should), he will not need to have any more EEGs.

S is still being seen twice a month by a physical and cognitive therapist. We recently added an occupational therapist to the mix. S has choked several times on crunchy foods, so he got assessed for a feeding delay. The occupational therapist agreed to take him on as a client for a few months, but she thinks he'll learn quickly enough to be finished with OT by October. Our cognitive therapist has told us that S will definitely not qualify for CT at his annual evaluation in October since he's doing so well. The physical therapist is the only one we might continue to see on a regular basis. S is still having some balance issues that cause him to fall. Our neurologist believes S' balance may be the only thing that was affected by the seizures. It's much better than what it could have been, so we won't complain. We recently took him to get a hip x ray done to rule out misalignment of the hips. All results came back normal, so we're waiting to see where to go next to help his balance.

S is saying more words than I can count and repeats everything we say. He has even begun stringing words into simple sentences. S has also surprised us by taking an interest in letters. He can now recognize 13 letters when asked to find random letters in a puzzle. S has also learned to climb stairs, so he's keeping mommy and daddy on their toes!

We are also very excited to announce that S will officially be one year seizure free on July 30th! This is a huge milestone for S, and we are so excited to celebrate with him. Be on the lookout for celebration pictures later this month. Don't forget to send him a congratulations that day if you think of it!

Checking In

It has been a while since I last posted on S's progress. Let me preface this post by saying that this is strictly an update. No reason to worry!

S went for a neurology check up today. There was no EEG today as his last visit had shown a clear EEG. S' neurologist let us know that he was developing normally for a child his age, and that the reason for this is solely due to the fact that we caught his spasms so early.

S will not return for another neurology appointment until July. After that, we will be seen in January.  If nothing happens between now and his  second birthday, then S will no longer be a patient with neurology.  As silly as it sounds, I feel like that last check up will be very bittersweet for the Hill family. I feel as though a part of us will always be attached to this neurologist because she has been with us from the very beginning of this incredibly difficult road.

I wanted to give an update today to celebrate an upcoming milestone. As of January 31st, 2015, S will have been six months seizure free! We are so thankful to have this celebration be a reality. Six months ago, it seemed impossible that we would ever reach this milestone.

We got an informal assessment done on S' cognitive and physical development yesterday. He is now considered to be within the 18 - 24 month age group in physical development. He is right on track or ahead for his age in every other area. The only deficit he currently has is with receptive communication. There is a 7% delay in that area. However, the cognitive therapist is not concerned and feels he will catch up quickly. Both the cognitive and physical therapists feel the spasms didn't affect his development at all.

We are so grateful to be able to share such positive news with everyone, and we hope the goods news only continues as time goes on!

Great Leaps - and Steps!

Seth completed his last dosage of Vigrabatrin on Monday, October 20th. It has only been two days off the medication, but he's doing great. Our neurologist seemed fairly confident that he would not regress to having more seizures after weaning him. While I know deep down that this is true, it doesn't keep the anxious mommy at bay. I have found myself getting more and more nervous each day that any little tic he has might be the return of the spasms. I am guessing that this will continue for a few months before I finally come to the conclusion that everything is going to be fine.

Seth has made a few leaps in his developmental milestones since the last post. He is now walking (up to 16 steps at a time!), can chew soft solid foods like bananas and carrots, and likes to make a "h-sh" sound.

As mentioned previously, Seth's neurologist referred us to ECI (Early Childhood Interventions) to see if he would qualify for any services. We met last week with our case manager to answer background questions. Today our case manager and physical therapist came out to do an evaluation on him. The evaluation encompasses a wide range of skills and takes about an hour and a half (at least in our case) to complete. The areas Seth was tested on today included: personal-social, adaptive, fine and gross motor, communication, and cognitive abilities. Our case manager and physical therapist ran through a battery of tests with him and asked us questions to decide his score in each area. As there were quite a lot of areas tested, I had a hard time keeping up with some of the scoring, but I will do my best to share what I retained.

In personal-social skills, Seth scored at 13 months. We were told that he is interacting quite well with those around him, so there was no deficit in this area. Fine and gross motor skills were averaged together for a total score of 11 months. He had a slight deficit in fine motor skills due to his "messy" pincer grasp. Since he is already walking, that put him ahead of the curve in gross motor skills. However, he will be receiving PT services to help with his balance and strength while standing and crawling. We have been given a goal to help Seth learn to crawl rather than hop. The other two goals were for him to be able to stand up without pulling up onto anything and to walk at least ten feet. Both of these goals should be met by January.

Seth scored at 9 1/2 months in communication. His receptive communication was above average at 11 months, but his expressive communication scored at 8 months. Again, both were averaged together. Since Seth understands certain commands such as "no; stop; come here", he scored high in receptive communication. He still does not copy sounds that we make, so this brought his expressive score down. He has a goal to begin producing consonant sounds and waving hi and bye. For his cognitive abilities, he scored at 8 months simply because he has not mastered object permanence yet. Josh and I have been working on this skill since he was six months old with no success, so we are anxious to be given ideas to help him master this skill. He scored right on target at 10 months in the adaptive area. I really don't remember what this area entails, but he has no deficit in this area.

We will begin meeting once a week beginning next Tuesday to address his PT and communication/cognitive needs. Everything should be reassessed in January. Most of the services he will be receiving seem to be preventive rather than greatly needed. Since Seth has the infantile spasm diagnosis, he automatically qualifies for the services. Our case manager wanted to go ahead and sign him up for services to keep him on track. She doesn't want to risk him regressing backwards. Josh and I are anxious to begin learning what we can do at home to help him meet these goals. We are both excited to be learning ways to help him!

All the kind gestures, comments, and thoughts over the last few months have been greatly appreciated. Josh and I feel that your support has been integral in helping us to stay positive. Thank you so much!

Terrific Results

Seth returned to the hospital today for his updated EEG. He has been on the Sabril/Vigabatrin for about six weeks now with no seizure activity since July 30th.

We knew ahead of time that this day would not be enjoyable. EEGs are never enjoyable for Seth. As expected, he screamed throughout the preparation for the EEG and fought me when it was time for the sleeping portion. I was able to get a clear view of the screen today and was upset to see that several large spikes were still appearing on the screen at random times.

As we left to head to his neurology appointment down the hall, I prepared myself for the inevitable. We were going to be told that his EEG still wasn't clear. When his neurologist walked into the room to see us, I was shocked to see a smile on her face. We were told that his EEG was FINALLY clear after all! I obviously don't know what to look for during the test. :)

She said there are still a couple of "sharps" occurring when he falls asleep, but everything was normal other than that. The sharps were explained as being much smaller than spikes and not a huge worry.

She asked about developmental milestones, and we mentioned that he still seems to be struggling with speech. She told us that while she thought everything would turn out fine, a reference to ECI (Early Childhood Intervention) would probably be in his best interest. That should be set up later this week.

We celebrated his clear EEG today with family. It was wonderful to be able to share his good news with the people we love most!

Our other great news is that Seth began weaning from the Vigabatrin tonight. In four weeks, he should be off it completely! We have been told to return for his next neurology checkup in January. He will not need another EEG at that appointment. We are so excited that our little superhero is doing so well! Thank you for all your continued prayers and support!

ERG? What's that?

Seth went in today to have an ERG (electroretinography) done on his eyes. Josh and I had never heard of an ERG prior to Seth's first eye appointment in August, so today was quite a learning experience for us. We were given instructions to not feed him after midnight as he would be under anesthesia for the duration of the procedure. As always, with a child as young as Seth, this made us nervous. He had been under full anesthesia prior to this in June when he had his MRI and did well, but this procedure would be done in a doctor's office that was not connected to a hospital. Luckily, Seth was only mildly sedated and was awake the whole time.

We were told that Seth's ERG would give a baseline of whether or not his retinas had changed due to the Vigabatrin. Unfortunately, it's not a very fun test to watch. He first had to be given the anesthesia while we were seated in a dark room. After that had kicked in, Seth and I were moved to another dark room where his eyes were held open using some metal spectrums and a kind of contact lens was placed directly on each of his eyes to monitor the electrical activity in his retinas. The doctor then used a tool that flashed several lights into his eyes. The test was then repeated with the lights on in the room.

Seth handled the test much better than I expected. He squirmed a little at the beginning of the test, but then just "talked" to myself, the anesthesiologist, and the doctor during the remainder of the test. When the test was over, the doctor told us that his results were normal for a baby in his age group, and that there was one large discrepancy between the data on the eyes during one test. However, she was not concerned about this difference as she notated that it was probably due to the fact that the makeshift contact lens did not fit that eye properly. Unfortunately, there are only two sizes in the lenses for babies and neither size truly fit his right eye, so she had to work with what she had been given.

His test results were faxed over to his eye doctor, so I'm sure we will hear more about his results when we return to the regular eye doctor in November. We are definitely glad that no vision issues have come up while using the Vigabatrin!

Since my last post, Seth has learned how to pull up on everything in sight and has produced a "d" consonant sound a few times. He has also given up almost completely on crawling and has chosen his preferred method of movement to be hopping everywhere. He's gotten quite adventurous and has hopped all the way from the living room down the hall to his room so far. We are really starting to do some serious baby proofing!

Seth will go in for his next EEG at the end of September, so we are hoping for even better news after that appointment. For now, things are going really well. Seth has been seizure free since July 30th, so we have finally hit one month seizure free! He is completely off the ACTH and prednisone at this point and is solely using the Vigabatrin. We will get a better idea when he will be weaned from that medicine after his EEG at the end of the month. Keep praying for our little fighter. It is doing wonders!

Miracle Medicine

I know many of you have been waiting for an update on Seth. I had been waiting until the Vigabatrin/Sabril had been in his system for a full week before choosing to update. To recap from previous posts, Seth had been placed on Vigabatrin to help lessen his seizures. The neurologist had told us that he could become seizure free as soon as 24 hours after beginning the new medicine.

Josh and I are VERY pleased to announce that Seth has been seizure free since Wednesday, July 30th! The Vigabatrin definitely seems to be working. We will go in to a pediatric eye specialist on Monday to check on his peripheral vision. These visits will continue every three months.

Seth has now started attempting to stand from a sitting position without pulling up on anything. He isn't successful yet, but he's getting close. He looks quite funny hopping on his bottom repeatedly in a failed attempt to stand! I've been told that he reminds many of Tigger when he does this. Josh and I are loving watching him grow and learn new skills!

The ACTH has finally given Seth a "moon face". I'm not used to seeing so much roundness to my little boy's face. It's going to take some getting used to on my part!

Pray that Seth's eye appointment is uneventful. We are hopeful that the new medicine does not end up affecting his vision. Thank you so much for your continued prayers and concern!