Postponed Update

I've been a little behind on giving an update after Mondays post, I'm sorry about that as I know many of you follow this blog instead of calling for updates. I didn't mean to make you wait but in the spirit of true transparency I needed time for myself to accept Mondays visit before letting everyone in on what's happening. 
On Monday afternoon a very nice nurse came to our apartment from Children's First (a state funded organization which monitors high risk children, http://health.state.ga.us/programs/childrenfirst/).  Paisley went down for a nap about 30 minutes before the nurse arrived but I didn't have to wake her since the nurse just wanted to survey me about different developmental milestones Paisley has reached or not reached.  I guess it was kind of a blessing that Paisley was sleeping because she had a LOT of questions and surveys to fill out. So, she spent about an hour with me asking me all about things Paisley can or can't do to determine if Paisley would be referred to the Babies Can't Wait program.  She explained that Paisley would only be referred if she determined her to be developmentally delayed or if her type of seizures classified her as high risk.  Well, I assumed that her seizures would probably classify her as high risk and I was pretty sure if she was going to be delayed it would probably be extremely minimal and they would just tell me a few ideas to get her/ keep her on track. 
After the nurse completed all of the surveys (she asked me questions in five areas of development using the ASQ surveys) she totaled Paisley's scores.  I asked her if she was going to refer Paisley to Babies Can't Wait based on her type of seizures since she hadn't asked me any real questions about her seizures yet?  She said Paisley would qualify for Babies Can't Wait without considering her seizures.  Obviously I knew at that point that something I said in the surveys made her think my perfect daughter could have some type of delay.  I asked her if according to her surveys Paisley was delayed.  She gave me a very blank look.  I think she could tell she had to choose her words carefully as to not invoke the wrath of a worried mom.  She showed me the scaled they use to judge development.  In the five areas they rank a baby Paisley was in the delayed range in four of the areas and in the borderline range in one of the areas.  My heart sank.  I wanted to run and grab Paisley out of bed to show her that obviously her papers were wrong because Paisley is perfect!  I'm with her everyday and there is nothing 'delayed' about her.  She smiles, she's happy and she is constantly doing something new, she can even tinkle in the potty. 
With no further explanations the nurse got her things together and told me Babies Can't Wait would contact me within two weeks to set up a full assessment of Paisley where they actually see her and don't just ask me questions.  This was a relief because of course I felt like I answered the questions wrong and I had misrepresented my daughter.
Of course I immediately got online to research developmental milestones in babies and I was glad to find that if Paisley is in fact behind she certainly isn't far behind. She's does everything that a 6 month old can and most of the things a 7 month old can. I keep reminding myself that during the month she was having seizures/starting medicines, she slept and ate, that's about it.  She felt too bad to try new things and now that she's feeling better she's ready to go!
For me though, this news has been the hardest for me to hear.  Even if Paisley were to be developmentally delayed it's not that I would love her any less but it's the first time that I feel like she has been really effected by the seizures.  Watching her have seizures has been horrible but knowing that they have caused some damage is even worse.  It's such a helpless feeling to know that I did everything I knew to do and I still couldn't prevent it. 
Now we're waiting for Babies Can't Wait to contact us to get things going.  Just was a side note here,  seriously BCW, two weeks?  That's half a month!  In baby time that's huge!!!!  Didn't anyone ever tell you that babies CAN'T wait?  Oh wait, that's the name of the program so you SHOULD know that. *rant finished.
To not leave things on a down note,  Paisley is doing AMAZING!!!  She's up on her knees and elbows getting ready to try to crawl.  She reaches for things to grab them and can scoot backwards in her walker.  Also, she's in a great mood, smiles all the time and laughs when daddy is really funny.  Also she is now over TWO WEEKS SEIZURE FREE!!!! Praise God!!! Praise God!!!!  Also we're working on four signs this week, Mama, Daddy, Milk and More.  She's going to be signing and ready for Deaf Culture events in no time!

Doing Well!

So, I have to tell you all, since Paisley started to have seizures she has been unusually unhappy and with the start of the ACTH it was getting worse.  While I tried my best to stay positive it was very hard to watch my baby be frustrated all day everyday.  If she was awake she just whimpered for hours.  I prayed that God would at least let me have smiles every once in a while. I was by no means frustrated with Paisley but the constant bad mood was incredibly tough to handle. okay so letting you know how wearing the fussing was on me is just to be able to explain how ecstatic I am about her current state.  Last Wednesday she was in a pretty good mood and her mood has just gotten better and better since.  God has truly given me hope and peace.  Paisley has been laughing, smiling and rolling like crazy!!!  It's such a change from what we were experiencing and such a relief to me!  I know that we don't know if she's still having hypsarrhythmia but she hasn't had a seizure for over a week AND she's a happy baby.  I couldn't be happier!!!  I feel so blessed that she is doing so much better right now and I will keep praying that her EEG will be normal in December.

One other note,  since babies with infantile spasms almost always experience developmental delays Paisley has been referred to Babies Can't Wait.  We'll meet with them today and will hopefully get a rough estimate on how she's doing developmentally.

Visit to the Neurologist

Well, we went to the neurologist today and got great news!  So far all of her tests are negative!  They are sending her to have more blood work done but it looks like everything is okay. 
Thank you all for your prayers today!
One other update, thanks to Paisley's appetite she was up 5 times last night wanting to eat.  That means I probably got about 3 hours of sleep combined last night. Needless to say I'm pretty exhausted today, but Paisley has been happy.  She made up for waking me up over and over again by smiling every time I got her out of her crib.  If you've been reading this blog you know that the smiles haven't really been happening lately and it's been kind of depressing for me.  Anyway, she smiled a lot last night and even laughed.  These last couple of weeks have been a little rough and frustrating to experience but being able to see her bright smile was comforting.

10 days down

It's been a while since I've made a post so I have a lot of updates...
First, just in case you don't make it to the end of the post,  I am asking everyone who prays to set a reminder on your phone for Wednesday, Sept 15 at 10am.  Paisley has a doctors appointment at that time and we get all of her tests results.  I am a little bit stressed about the results and I know I'll be praying at that time and I'm asking that you all join me in prayer.  We are praying that they won't be able to find anything in her tests because that would mean she has the best long term prognosis. Thank you all of joining me in prayer!
Okay, now onto the updates!  Paisley has been on ACTH for 10 days now and she not had a seizure since Sept 8th at 8:45pm. That's 5 days without a seizure!!!!  During the first week on Paisley's treatment she had 2 shots each day of .37ml of the ACTH. Last saturday she had her first day of only one shot each day also of .37ml.  This coming Saturday will be her first day since the start of treatment without any shots because is is reduce to having a shot only every other day.  She'll continue having a shot every other day for the remainder of the treatment, 12 weeks total, but the amount of the dose will be reduced every two weeks.  So, Paisley's last injection will be the day after Thanksgiving.
Paisley seems to be tolerating the injections pretty well.  Unfortunately she is a very smart girl and knows when she's going to get an injection and starts to push me and Gerry away.  It's tough giving her the injection but I just keep reminding myself that it's the best thing for her and it's only 12 weeks.
While she's not having any major reactions to the medicine she is having some side effects. 
The doctors and nurses warned us that she might be a little grumpy while she's on the ACTH but that is the biggest understatement I have heard recently.  She is pretty much constantly fussing.  It's very hard for me to hear her fuss all day and not be able to do anything for her when she was such a happy baby just a few weeks ago.  Right now she's either eating, sleeping or fussing.  I know it will pass but I could really go for a laugh, smile or even a coo these days.  Just some advice to any parents who may have a child also on ACTH do whatever you can to relax while your baby sleeps it will help the fussing be less overwhelming.
Paisley's appetite has increased a lot from the ACTH as well.  Yesterday I started supplementing with formula because Paisley has eaten the 100+ ounces of supplemental breastmilk I had saved up in our freezer. She was weighed today and has put on 2 lbs in the last 10 days. She's getting some pretty adorable chubby cheeks though!  Luckily she is taking the formula pretty well.  She's on soy formula since she's allergic to all dairy and I was nervous the taste might put her off.
Last side effect and another request for prayer, Paisley's having some blood pressure issues.  It's a little high but hopefully it won't be a problem. They check it every week right now to make sure it doesn't get too high.
Okay, now for the GOOD NEWS!!!!  Paisley sat up all by herself this week!  Okay, so normally a 7 month old sitting up for the first time may not be too amazing, but for Paisley it means that she's still progressing.  A common result of infantile spasms is developmental delay.  Paisley sitting up means that she is still developing right on track which is a HUGE relief and answer to prayer.
Okay, I think that's all of now...  If you have any questions about Paisley's treatment or her status please email me or comment on this post.  I'll be sure to post after her appointment with the neurologist on Wednesday.
Thanks again for all of your prayers and please remember to pray with me on Wednesday at 10am!

ACTH

Gerry and I were trained yesterday on how to give Paisley her injections.  She got two injections of ACTH yesterday and will have two a day until next weekend.  After that she'll be gradually weaned off of it.  She has done amazing with the injections and only cries for a split second. I'm so proud of her!
While she has done very good with receiving her injections there is a chance that it's already making her quite hungry and quite fussy.  She slept through the night last night but has been fussing since she woke up this morning.  In addition to being extremely fussy she ate about 8 oz more that she usually eats in a day. 
Last thing, today was her first visit with the home health nurse.  The meeting took a while but was pretty good overall.  When the nurse took Paisley's blood pressure it was quite high though so we'll go to the pediatrician tomorrow to see if that was just a fluke.
Other than the fussiness and extra appetite everything seems to be doing well!

Starting a New Medicine/Smiles are Priceless

Paisley has been taking medicine for the past week to help control her seizures until her real medicine was delivered.  The medicine she's on now just controls her brain activity enough to prevent the seizures while the new medicine will hopefully fix the problem causing the seizures.
When we started the bridge medicine last week she only had to take it twice a day but about half way through the week they had to up the dose to three times a day to keep the seizures under control.  Tomorrow she'll be starting a medicine called ACTH which we hope will completely eliminate the seizures. We'll go to a training session tomorrow morning to learn how to give her the ACTH which is an injection.  The training take place at the hospital where all of her tests were run so that there will be a medical staff available just in case she has a bad reaction to her first dose of the medicine.  We're going to continue to pray that after starting the ACTH not only will the seizures go away but Paisley will be her happy self again.

Since all of this has started our normally extremely smiley baby has gotten a lot more serious.  The seizures make her not feel good and the current medicine that she is on makes her quite groggy.  If I was dealing with that I probably wouldn't smile much either but it is very hard to see a 7 month old not want to smile.  Wednesday I tried and tried but I couldn't get her to smile at me even once.  I was quite upset and was worried she might have forgotten how to smile since I've read many things saying that babies regularly stop smiling as a result of infantile spasms.  Luckily yesterday her daddy called me while I was in class to let me know that he smiled at him and just this evening I got to see the first big smile that I have seen in a few weeks.  Paisley was sitting with her Sug watching a little tv and got this huge smile because she saw a dolphin on the tv.  My heart completely melted because that is my daughter, she may not feel like smiling all the time right now but I know she will be herself again soon. 

New Seizure

Up until last night Paisley was seizure free for over 48 hours.  Last night she developed a new type of seizure.  Her doctor has increased her 'bridge' medicine until we can start the ACTH.

The Last Two Weeks

Two weeks ago Paisley woke up about 11pm at night, which is unusual for her since she normally is a champion sleeper.  Since it was such an unusual occurance I thought she might feel bad since she was teething at the time and I brought her to sit with me and my husband until she went back to sleep.  While she was sitting with us she started to nod her head forward several times in a row. She was visibly upset by this action but my husband and I assumed she was just a very tired baby and must be having trouble with head control due to be so tired.  She went back to bed and our journey began. 
During the next week Paisley had four more similar episodes.  I made an appointment to discuss this with our pediatrician since she was also running a mild fever and was very fussy.  The pediatrician assumed it was a type of infection, started us on an antibiotic and sent us home.
After being on the antibiotic for a few days the movements nor the fusiness stopped.  A week after the first episode we ended up in the emergency room with our daughter as the seizures were getting progressively worse.  The doctor in the ER took blood and ran a CT scan which came back normal.  The doctor sent us home and suggested we follow up with our pediatrician the next day.
Before I had an opportunity to call the pediatrician she called me as she had scheduled an appointment for Paisley to meet with a pediatric neurologist the next day.  A week and a half after the we first noticed the movements, my husband, Paisley and I were waiting to meet with a pediatric neurologist.  We were prepared with a video of one of the episodes which I was blessed enough to be able to capture the day before.  Upon seeing the video the doctor sent us straight to the hospital to have test run.
We spent the following 24 hours in the hospital with Paisley were she had blood taken, a MRI, an EEG and a spinal tap.  She was such a brave her the entire time and even fell asleep during her spinal tap.  We are still waiting on the results of most of the tests but the doctors were able to tell us that she is having infantile spasms based on the findings from the EEG.  They also told us that since she has never shown any developmental delays or other medical problems she should have the best possible prognosis. 
Paisley is due to start a medicine called ACTH soon and we hope that it will fix the problem causing the seizures.
We have an appointment in two weeks to find out the results of all of the tests.