Since coming home from the hospital, Jenelle is doing so much better and is back to her old self - laughing, smiling, cooing and rolling all over the place. Its such a wonderful change from the very lethargic baby we had over a week ago!

The weaning process is complete and Jenelle had her last shot of ACTH on this day! It will take another week or so for her immune system to be replenished so that she can return to daycare. As of last Friday, we hadn't started any new drugs because Dr. Phillips wanted to give the B6 more time to work. We were excited up until last night as Jenelle hadn't had a seizure all weekend... unfortunately, she had 4 at dinner on Sunday night, and had 3 this morning at breakfast. I emailed Dr. Phillips today to give him her status, and he sent an email with instructions to start Vigabatrin! Vigabatrin is in "crushed pill form", so she'll get it with her food or bottle.

Jenelle's first birthday was last Wednesday, and we had a small pizza dinner with ice cream cake to celebrate. Jenelle had her very own ice cream cake (from Cold Stone Creamery) and absolutely loved it... until an hour later when the dairy upset her tummy. Oh no, Mommy overdosed her on dairy! She cried for nearly an hour, but after a dose of Zantac, she was fine! We are all doing well and its nice to get back to somewhat normal. We are hoping and praying that the Vigabatrin is the drug for Jenelle.

Jenelle's 1st Birthday!

While I thought this day might be emotional for me, knowing that Jenelle is so far behind developmentally, I found that I was rather relieved that it finally arrived. I see this day not as a milestone to point to what Jenelle "isn't" doing, but to hope for all that she can accomplish in the coming year. Life with a special needs child means there are constant reminders of how your child isn't "normal." Birthdays are just a part of those reminders, but thankfully only a small part.

Jenelle is the strongest person I know, and she has already been through so much in her short 12 months of life. Think of the potential for the coming year, and how she will strengthen and grow. That helps me get through this day.

Jenelle was released this afternoon after another EEG. She finally made a dramatic change of status early Sunday afternoon. Saturday evening, she was more awake, however Sunday morning she was still a little lethargic. We took Jack and Jenelle for a walk around the hospital in her red wagon they provided. When we were done, Brett and I took Jack to lunch leaving Jenelle with Grandma. Upon our return, she was a completely different baby, rolling around in the crib and making noises. It was a great to see her back to somewhat normal.

About 10 minutes after we returned from lunch, Dr. Phillips made a surprise visit. He said he had been thinking about Jenelle's status, and realized we'd done something wrong. When Jenelle was admitted last Wednesday, I told Dr. Phillips that I remembered that her best day of seizures was the day after the B6 treatment two weeks ago. So, upon admission, they gave her B6, along with the increased Phenobarbital, and a decrease of ACTH. So, technically, we were making 3 changes at once, so his problem is determining which drug is making the difference. Apparently, in addition to B6 deficiency, B6 is also used solely as a treatment for Infantile Spasms. Usually it is used in conjunction with another drug. So, Dr. Phillips requested another EEG this morning, so he could see her response to the B6, and determine whether or not it is helping her seizures. B6 is good for her anyway, so she now gets it twice a day. We will hold off a little longer on starting the Vigabatrin until we have a better reading of her B6 response, and her Phenobarbital level. We will be starting it soon though, probably the end of this week or early next.

There was an article in Sunday's Orange County Register about the various Epilepsy Centers now available here that weren't available two years ago. The article featured a photo of our Dr. Phillips outside the CHOC Epilepsy Center. Brett and I teased Dr. Phillips on Sunday and asked for his autograph... we told him that in addition to seeing the "famous" Dr. Shields at UCLA, we now see the "famous" Dr. Phillips of Orange County. We are so lucky to have such wonderful resources so close at hand.

Big Brother Jack is doing well. When he and Brett drove to the hospital to pick me up for our trip to the pumpkin patch on Saturday, Jack asked where they were going. Brett replied that they were going to the hospital to pick me up because I was there with Jenelle. Jack then said, "Yeah, Jenelle's sick, but Mommy is going to make her better!" This evening after I picked up Jack at daycare, I took him on an errand to Target to get Jenelle's prescriptions. While we were there, I bought him a pair of new shoes with "Thomas the Tank Engine" on them (his absolute favorite of course.) When I put him in the car as he was wearing his new shoes, he looked up at me and said, "Mommy, I'm happy." Oh, melt my heart - he is just so sweet, and he really is handling all this very well.

The good news - Last night and this morning, Jenelle appears more alert and awake! She is not her usual self, but much improved ovreall. If this continues, we may bring her home today or tomorrow, or at the latest sometime next week. We hope she can be home for her 1st Birthday on Wednesday!

We saw Dr. Phillips last night, and he didn't exactly agree with Dr. Trice that Jenelle was "Sub Clinical Status", he felt her sleepiness was simply a bad side effect of ACTH. As I said in my last email, we hadn't "seen" a seizure since Monday. Obviously her EEG indicated she was having seizures, so the "visible" ones would be less visible - I think both doctors are right. Last night, Jenelle had some "more visible" seizures like she was previously doing, which may mean she is coming out of her "constant" seizure state. We really won't know until she is completely off the ACTH.

Brett and I spent time with Jack this morning at a daycare field trip to a Pumpkin farm. Seems we all needed an outing like this. I'm the one staying overnight at the hospital with Jenelle, and she is now a "famous patient" as everyone heard about the problems starting her IV. Fortunately, the nursing staff is friendly and supportive.

Jenelle is in the hospital

Jenelle was admitted to Children's Hospital again on Wednesday. I emailed our neurologist Dr.Phillips late Wednesday morning to let him know we weren't seeing any more seizures, but that Jenelle was still sleeping all the time and very lethargic. He called me back to ask me to come in for another EEG that afternoon. The results of the EEG showed that there had been no improvement with her seizures, and in fact, they have become worse. He admitted her immediately because he was concerned with her being so sleepy.

Since being admitted, Jenelle has had numerous tests including blood work, urinalysis, a CT scan and spinal tap. All of those tests results were normal. Dr. Trice is another neurologist who covering for Dr. Phillips today, and she informed me this evening that Jenelle in light of the normal results, she believes Jenelle is in what they call "Sub Clinical Status" meaning a constant state of seizure, but presenting subclinically (not visible to the eye). This can be treated with medication. She is responsive and cries when touched, so Dr. Trice does not consider this a state of "Status Epilepticus", which is much more critical.

We are taking her off of the ACTH, and the weaning process will take 10 days. They will increase her Phenobarbital through IV this evening, and hopefully she will be more responsive once that kicks in. We will start Vigabatrin as soon as possible, and will discuss that with Dr. Phillips tomorrow.

Please keep us in your prayers - we appreciate the support. Also please feel free to contact us at the hospital if you need to... we'd welcome the company! Thanks so much for the support! I'll keep you posted!

ACTH Treatment - Week 2

Today is Jenelle's 14th day on ACTH. Last Wednesday we increased the dose to 50 units a day, and her seizures decreased a little more, but she still has one or two a day. Last Thursday she had trace blood in her urine, so we did a urinalysis and it was normal.

Yesterday, we saw our Neurologist Dr. Phillips for a follow up visit. He was not happy that her seizures have not ceased, and is inclined to wean her off ACTH and start Vigabatrin. When we discussed the blood in the urine, I also mentioned that Jenelle is sleeping all day, all night, and only really waking to eat. Dr. Phillips did not like that at all. He felt that she should not be sleepy from the ACTH, and told us to go to Emergency to run a blood test, urine test and possibly another spinal tap. He felt she might be sleepy because she might be fighting off an illness. After 5 attempts (and 3 hours later) they finally got enough blood to run the tests. The doctor at Emergency was great, and thought it best to run a Phenobarbitol panel as well to make sure her drowsiness wasn't caused by too much Pheonbarbitol. All of the tests came back normal, and her Phenobarbitol level was actually very low. They decided they didn't need to run a spinal tap and sent us home. Also, her blood pressure has continued to stay on the "normal" side, so hopefully we over that scare from last week.

Once we got home, I spoke to Dr. Phillips and he said he was still worried about her sleeping all the time, but that he was glad the tests were normal. We are not to let her sleep longer than 8 hours so she can get enough liquids. She is actually eating much more now that she has been on the ACTH. She has increased from 1 1/2 jars of food a day to 3 -4 jars, and from 3 bottles to 5 bottles a day. She gained 2 1/2 pounds since we left the hospital two weeks ago. We are going to continue the ACTH at the same dose until Wednesday, then talk again with Dr. Phillips about possiblly weaning her off. She is starting to get cranky and cries a lot when she is awake, so its nice that she sleeps most of the day. We understand his concern though. He was not inclined to increase her to the maximum dose of ACTH because he hasn't seen a cesation of seizures. He felt with her sleepiness, the side effects of the high dose would be just too risky.

We may decide to wean her off ACTH on Wednesday. If we decide to wean her off on Wednesday, she could be off the medication completely by her birthday the following Wednesday. We just wish she were seizure free, but at least we gave this medication a try.

ACTH Treatment - Week 1

Today is Jenelle's 7th day on the ACTH injections. Poor little thing is starting to get track marks on her thighs, but she is still taking the shots well and has only cried once or twice. We had a scare on Sunday with her blood pressure reaching 190 over 160 - too high even for an adult. We are using just a hand pump blood pressure gage with a stethoscope, but I asked my next door neighbor who is in nursing school to come check me. She happened to have a friend visiting who was a Nurse at CHOC for 12 years and she checked it as well. Both got similar readings. So, we went to the emergency on Sunday night at the request of the doctor. We didn't even wait to get in, and wouldn't you know her pressure dropped to 109 over 64 when they first checked it. They monitored her in the ER for two hours and sent us home. Better safe than sorry!

Jenelle is still having seizures. Yesterday she had more than any other day on the injections so far. While this is discouraging, I am being told by fellow "IS parents" I've met on an internet support group for Infantile Spasms that it could take the full two to three weeks to stop the seizures. In fact, one parent said their child had a very bad day of seizures before she stopped completely the following day. The "grand finale", or so she described. Hopefully yesterday was that for Jenelle.

Other than the blood pressure, Jenelle is doing well. She sleeps a lot, and seems to be more withdrawn, but she does have her playful moments when she turns into a cooing chatter box, and rolls across the room. I will keep posting update weekly.

Jenelle was released from the hospital today at around 5:00 p.m. Brett and I now know how to give shots, and we each gave Jenelle a shot before she was released. She didn't cry for either of us, and hasn't cried for a shot since! Jenelle will be getting her ACTH in "gel" form through "intra-musclular" injection twice a day at home. The needle is an inch and a half long! If all goes well and she doesn't have serious side effects, her next hospital stay will be in two weeks for another Video EEG. She has only had 4 injections so far, but seems relatively unphased. She has been a little sleepier than usual, but that is all we've noticed so far. We also have to check her urine for protien and sugar, her stool for blood, and her temperature once a day while at home. We were given little "testing" devices for all of this, and instructions on how to do each as well (the urine and stool that is). We also need to check her blood pressure twice a week, and we purchased a stethoscope and infant blood pressure meter thingy (not sure what its actually called or whether I can pronounce it) A home health care nurse is going to visit us the next two days, then once a week to make sure all is well. Jenelle also needs to see our Peditrician once a week and the Neurologist every two weeks so they can monitor her progress. Needless to say, she is being well monitored, and we hope things remain the same (knock on wood.)

She is still having seizures, and some seem to be bigger than usual, but the same thing happened when we started Phenobarbitol, so we hope it is a trend. Ironically, Jenelle's only day with very few seizures was the day after the B6 treatment, and before we started the ACTH. The nurses at CHOC were absolutely wonderful. We had the same day nurse for 3 days, and she paraded Jenelle around the nurses station before we left. We hope to see her again in 2 weeks.

Big brother Jack is doing well and seems very happy to have Mommy home (I stayed at the hospital overnight the entire week.) He seems a little confused because things are obviously different, but is really holding up well. He has moments when he reminds us that he is 2 (ie: tantrums) but as long as we keep him active and playing, he seems to be at his best. Brett's parents brought him to the hospital on Tuesday and he cried at first and immediately wanted to go home. When he realized Jenelle was in the crib, he wanted to touch her, and eventually threw his sippy cup onto her head to wake her up! We thought it was important for him to see Jenelle in the hospital, so he could realize where she and Mommy have been. Overally, he's scared and confused, but glad things are somewhat normal with Mommy and Jenelle at home. He's picked up on my "pet name" for Jenelle and calls her his "Baby Girl!"

So now, we are at home and keeping things clean and sterile. We've made Jenelle's room at the "sterile zone" and plan to keep her in there as much as possible, or in her pack n play outside in the living room. She will be out of daycare for 6 weeks, and hopefully not back in the hospital too soon. Brett and I are holding up well. We have our moments - its not easy to see your child be poked and proded while they are screaming! These next few weeks will be difficult, but we'll get through it, and hopefully our little girl will be a new person!