Tuesday, June 30, 2009
...Evidentally the other part of the results are still unknown as far as the terminology that was used in the dictation (that's the part that Matt didn't quite remember or fully understand), but the neuorologist that gave the results to our ped's office said that it was a good EEG overall. He told our ped's office (who then told us), that the remainder of the dictation was only noted because of Kylie's history, and would not have been noted on an otherwise healthy, typical infant.
Whew! So that tells us that Kylie's change in appetite is apparently not a result from something going haywire in her little head, which is really good news on many fronts. One factor, one Huge factor has been eliminated, so that is great! Kylie is still back and forth on how much she wants to eat, or if she wants to eat. Every feeding is different. I think yesterday was the first time since she started this hunger strike where she actually held the bottle during her feeding...we had typically been holding it for her while holding her arms down (to keep from pushing it away), so this was a big sign of improvement. Way to go Kylie :)
Definitely the most difficult thing about whatever goes on with Kylie is the fact that we can't exactly dismiss anything as typical baby things, or ever assume that whatever changes she has are of no or minimal concern. Everything is something until proven otherwise. At the same time, every milestone Kylie has is quite the celebration. We get to celebrate things that aren't written in the books for typical milestones. We have so much more to be thankful for, so many more moments to cherish! For that we are eternally grateful...thank you God!
Monday, June 29, 2009
First though, here's what WebMd has to say about Electroenchepalograms:
"An electroencephalogram (EEG) is a test that measures and records the electrical activity of your brain. Special sensors (electrodes) are attached to your head and hooked by wires to a computer. The computer records your brain's electrical activity on the screen or on paper as wavy lines. Certain conditions, such as seizures, can be seen by the changes in the normal pattern of the brain's electrical activity."
Here's what goes on when we have an appointment for an EEG:
We typically show up about fifteen minutes prior to the scheduled start to get checked in. Then our technician comes and gets us from the waiting room and she works on getting Kylie all hooked up, which is a fairly involved process that probably takes twenty to thirty minutes. First she marks up Kylie's head with a red grease pencil to determine where each of the twenty-six electrodes will be placed.
The electrodes are hooked up to a computer which reads the brain activity. Without getting too scientific, a normal EEG looks something like this. That is, if this picture from Mass General is correct. I don't know, I'm not a neurologist!
There is also a camera hooked up so that any physical seizure symptoms can be noted.
The technician then places each electrode on Kylie's head with some glue that helps keep everything in place - it really stinks too! Then she injects some goop into each electrode, which helps transmit the electrical activity. After all that, Kylie gets wrapped up in guaze to help keep everything secure.
So during the test (if everything goes according to plan) she sleeps for at least ten minutes, and usually no more than twenty or so. Then we wake her up and flash the "party lights" in her face. This is a strobe light where the flashes get faster and faster until the flashes just about turn into a solid light. This is to see if she is photosensitive - obviously if she is, then these lights can induce a seizure.
Friday, June 26, 2009
In addition to being on the ACTH that makes a little baby incredibly fussy and inconsolable, Kylie erupted some new teeth. Not one, two, or three teeth throughout this process, but six!! Yes, that is right, she had six new teeth come through, so we got totally whammied with the ACTH and all of these new teeth popping through left and right. Let's see, we started the ACTH on April 18th, and she had a new tooth come through on April 23rd, then another on May 10th, May 14th, May 25th, and the last of the six showed up on May 31st.
Holding her own
I don't have a date for this one, too crazy with all the teeth and everything else, but Kylie started holding her own bottle during her feedings. It was so cute to see her holding that bottle, and then tipping it back to make sure she would get a good flow...just so cute! She is getting so big, so quickly...and not just the chunky-ness of the ACTH, she is growing up. Our baby girl isn't quite the baby anymore.
I know we did a post of this one, but I needed to add it to this post too. Kylie learned how to sit up without any support from mom or dad. It was just awesome to see her doing something so big! She hit another milestone, and that is just a big sign that she will beat this IS thing and overcome. Not having any developmental delays prior to the diagnosis, and the fact that she is continuing to develop so well is a total blessing...just greater celebrations for us all!
Despite all my sanitizing and mask wearing, little Kylie caught my cold the last week in May and had an icky nose for about 2 wks. From the moment I felt a sore throat coming on I began wearing a mask, and doing even more handwashing on top of the already extra handwashing I had been doing, but my bugs some how got to her. She was soo cute when she would take her bottle during the time when she had the icky nose...she would milk the bottle (she would squeeze the nipple with her hand to make the milk come out faster so she wouldn't have to suck) because it was too hard for her to drink with a snotty nose. She is a smart cookie for sure :)
Bouncing/Jumping Baby Girl
Goodness one of Kylie's most favorite things to do is bounce and jump around in the Johnny Jumper that we hang in the doorway. We posted a video of this with a misc update, but boy it is so cute. That clip is the first time she was in it and started bouncing around, but boy she has quite the ups now. Here is a clip taken of her jumping skills from earlier today.
Okay, so about a week before Kylie's diagnosis we had decided to take a break from solids as she was not having the best reactions to them. It was during our week off, when things unfolded. Anyhow, since the ACTH can cause blood in stool, and that is also a possible reaction of a food allergy, we were holding off on reintroducing them. After talking with Kylie's pediatrician about my concerns with it being forever (at least it seemed that way) until she would be back on solids, we asked what foods would be safe to try while still on the ACTH. So, on May 19th Kylie got to eat carrots again...woohoo! It is one of her favorites...also part of her celebration lunch and dinner on the day of her last shot of ACTH, along with some pears, and turkey rice.
Well, about a week before all of this I had went to the doctor for postpartum (4/6)...it was just a few days before my apptmt when I learned of so many other women that had went through this. Hmmm...maybe if I knew it were so much more common than what I had initially thought, I would have gone sooner (it's just not something that many women talk about openly until you mention how crazy you have been feeling). Oh well, I was going and that was the most important thing. My doctor decided to order some labs to check my thyroid levels. Later that afternoon I got a call from my doctor, yes my doctor called me, not the nurse and she said that my thyroid was not working at all and I was exremely hypothyroidism. I was like oh, ok. She said that could explain a lot of my fatigue, depression, and so on. I had to go back the following day for additional labs, and then I was started on Synthroid (synthetic hormone replacement).
When I started to feel like I was getting sick (woke up with sore throat), I called my doctor, because I knew we really couldn't let Kylie get sick with her being on the ACTH. Since my doctor was not in I got to see another doctor, and I asked if I could just get my blood drawn to check my thyroid since I was due to come back just a couple days later. She said that was fine. Well, after her asking more questions related to my thyroid stuff, she added additional labs to be done, as she suspected I had something called Hashimoto's Disease. It turns out she was right...why not, we have nothing else unusual going on in our lives right now...ha! Just click on the link and you can learn more about that...basically it's an autoimmune deal where my body is attacking my thyroid. So I will be seeing an endocrinologist for all of this...my first appt is July 9th. Since I have been on the meds I have definitely had more energy, and feeling more like a person. I can't wait to see what I can really feel like (what I am supposed to feel like) once we have me on the right dose of meds...I will be like super mom or something :) This deal is like nothing compared to everything else that has gone on, but coupling it with having your first child and Kylie's diagnosis of IS, it is not cool..bad timing for sure.
I also had a birthday (4/24), my first mother's day, our 3rd anniversay (6/3), and Matt's first father's day. We do pray that next year we will be able to celebrate these special days without a hitch.
Well, I think that is all that had taken place throughout our course of ACTH. Be sure to tune in again, as life is always happening :)
Thursday, June 25, 2009
It's as if she is saying, "Mom, can you just leave me be, I am trying to work here....as soon as I can get to the mouse that is."
You can see the beginning's of excitement as she finally got the mouse!
Umm.. I don't think that is how you are supposed to click the mouse Kylie..lol
She's just got the expression, as if I was interrupting the hard work they were doing. Too cute!
This is where she was showing her daddy her computer skills.
Tuesday, June 23, 2009
Let's see on Sunday, she had a total of 10 oz of my milk in a bottle, nursed for 2 minutes, and had a total of 1 jar of solids. Monday, 6 oz of my milk in a bottle, nursed for around 10 minutes, and 1/2 jar of solids. We are still working on today, so I won't post those stats. Hmm...this is odd to say the least since she is such a good eater. Matt called the pediatrician yesterday and they had us come on in...
...well, we visited the pediatrician (6/22), and everything looked normal, except for a red throat. We are hoping she just has a sore throat and that nothing more serious is going on. The ped's office contacted the neurology clinic, and they ordered some additional blood work to check her sugar and electrolytes and whatever else...this would let them know if her adrenal system was okay (the injections of ACTH causes the adrenal system to work harder and pump out more cortisol, so there was a possibility that her adrenal system was out of wack with recently coming off of the ACTH). Her labs were good..woohoo!! The neurologist also ordered an EEG for Kylie and that is scheduled for tomorrow at 9:30am.
Today I tried a sippy cup, and she got about 1/2 an ounce of pedialyte, but then she spit it back up. I think she only drank from the sippy cup because it was something new, and then she was quickly disappointed that it wasn't a new toy...just mom trying another avenue to getting some fluids down her. We tried a popsicle at lunch time, and she liked it for about 3 seconds, before deciding she didn't want that either. Oh, and we tried a syringe too..no way. At her 4pm feeding today I tried some of my milk in a cup and she drank about 3 oz (well, I'm sure at least 1/2 oz or more ended up down her chin), she was trying to chew on the cup most of the time, but also she kind of liked that she was getting some nourishment out of it..at least I liked that she did. So no idea what's going on right now, just praying it is nothing serious.
Our ped's office is having us call in and let them know what her intake is. We do pray that we don't have to get admitted to CM or anything like that to get fluids in her. Oh, baby girl you are so sweet and still smiling away, but how about a bottle so mom and dad can breathe a little easier.
Monday, June 22, 2009
Matt got an early Father's Day present from Kylie on Saturday. She was in such a laughing and gigglig mood, it was just so much fun! Pretty much anything either of us said it did, she would just crack up laughing...she has never done that before. I finally broke away from the fun, because I really wanted to capture some of this time on video. The video is a bit dark, sorry, not enough light in the room (and a light for our digital recorder is close to $100, so needless to say we won't be getting that anytime soon)...that's okay, you don't need light to hear her laugh, just your ears and your heart. An additional Father's Day gift from Kylie was that she slept through the night for the first time in forever..we honestly can't remember the last time she slept through the night. She went to bed around 8-8:30pm and got up at 5am! Way to go Kylie baby!!
Matt is absolutely a wonderful daddy for Kylie! He will do anything for her, and just loves her to pieces! He has come home for lunch every day since all of this started, so he could hold Kylie down for me when I had to give her the shots, and then finish up her feeding. I love nothing more than seeing the two of them together and the best is when she falls asleep in his arms and he is just sitting there watching her or falling asleep himself. Soo precious! Such a wonderful dad!! Kylie just adores her daddy too...smiling every time she sees him and always watching whatever he does. He is so great to take her on walks around the neighborhood or just going outside so I can have a bit of quiet time, or time for me to get caught up on things....amazing daddy and hubby! Matt is a very involved daddy and so proud of his baby girl...she is incredible, so she makes it easy :) I am very grateful for all he does, and just love him so much! Thank you for everything you do as a daddy and hubby!!
Thursday, June 18, 2009
Wednesday, June 17, 2009
...I don't think anyone would ever expect to have pictures or blogs detailing the crazy times we have been through with her diagnosis of Infantile Spasms. Sometimes I can't help but wonder if this has all been a bad dream (okay, nightmare), and soon we will wake up and go back to the perfect dream that we wish for our baby, for our family. How did we ever get here?
We were devastated with the diagnosis, and thought every dream we had for Kylie was wiped away, and our world was slowly closing in on us. In the beginning it was incredibly difficult for us to see beyond the negativity and begin our new way of life with Kylie. Through lots of prayer and support we were able to pick ourselves back up and begin again. It's amazing how much more clearly you can see and focus when your head isn't buried in fear. Granted it was not easy, not in the slightest...we still struggle with it from time to time. We constantly had to go back to the list we created, to strengthen our faith. It was also important for us to learn more about IS and find people that either had first-hand experience, or ones that could really understand how serious all of this is. It is through their personal battles and renowned support that we have been able to move forward and be ready for anything that comes our way...lately that has been lots of smiles from Kylie :)
We've had a heightened sense of hope since her seizures stopped. I can't believe it, tomorrow is our last shot of ACTH. At first I wasn't sure how I was going to be able to give my baby girl a shot, and now we are quickly approaching the last one. Matt and I are beginning to get worried about what the days, weeks, months, and years ahead will look like for Kylie. She is utterly amazing and we are so glad that He chose us as her parents...we are the lucky ones! It is our prayer that this is the end of the seizure and drug road for Kylie...nothing but rainbows and smiles from here on out.
We know there is still a long road ahead of us, but He will help us get through it all. He is always with us, we just need to call on Him when we are in need, and remember to thank Him for all He has done and for the love that He has for us. No love is greater than His.
Tuesday, June 16, 2009
It is just awesome to see all of the caring and supportive people that God has placed in our lives throughout all of this...His love is truly indescribable, and we are so very grateful for the many blessings that He has bestowed upon us. He is always with us, with all of us...we just need to be patient, and listen to Him, and follow Him. He will never leave us.
Sunday, June 14, 2009
I hope everyone likes the new look. We just thought the old was was just getting tired. Actually, the reason I couldn't stand it was because of the "double window" when we posted a video. Drove me crazy! This one just killed two birds with one stone. It fixed the video problem and it looks so much cheerier.
One other kind of neat thing about this one: there's a search box. It's the little white box - although it's not labeled - above the slideshow with the little blue birdy in it. Not sure how much that will ever get used, but once we get into the millions of posts (ha!), it would be nice to go back and search for everything with "Children's Mercy" or something else. Click the little birdy to search!
We also added some new pictures to the slideshow. I think there is something like 25 now (compared to about five before).
A couple of other random things:
#1. Two posts back I mentioned that we'll have another EEG. That's scheduled for Wednesday, August 12th. We'll meet with Dr. Le Pichon that Friday, 8/14 at Children's Mercy South. Speaking of J.B. Le Pichon, he's in France from 6/19 through something like 7/12. I think he's really worried I'm going to try and pester him while he's there with non-important questions. Let's just put it this way, he knows me. So, when he calls me back, he proably makes sure there is nothing on his schedule for the next half hour or so. However, I really appreciate him taking the time to answer all of our questions.
So, some prayers on 8/12 and 8/14 would be greatly appreciated!
#2. Comments - we know a handful of people out there read this. We would love to know who you are and maybe how you found the blog (if you don't know us). You don't have to leave anything too thought out or in-depth. Just let us know who's out there. It's like little, mini presents for us when we see comments.
#3. We all know the Royal's stink. One thing they lead the league in?
Friday, June 12, 2009
Not just any blankets though, super-special-prayer-blankets.
You see, they not only make the blanket all cutesy-wootsy, but they also put it in the church for members of their congregation to pray over. A short story accompanies the blanket so the pray-ers know who, and what, to pray for.
Well, this particular ministry made a blanket for Kylie and Jody covers her with it every time she naps.
Here's a picture of little Kylie with it:
Talk about good people.
I have no idea if anyone involved in the blanket will ever read this, but if you are, thank you so much! We have certainly found out first hand the power of prayer!
As an aside, you might have noticed that Kylie is napping on the couch and not on Mom or Dad. (Don't worry, she is nestled in her boppy, so she is safe from wiggling around too much). Over the past couple of days she has apparently learned to nap on her own (not requiring mom to hold her and rock her to keep her asleep). This allows Mom to move about the house or just chill. I'm not sure anyone understands how big of a blessing that is to Jody.
As always, thanks to everyone for all the thoughts and prayers. We deeply appreciate each and every one of you.
Thursday, June 11, 2009
Our last shot of ACTH is scheduled for Thursday, June 18...just one week from today. Only seven more shots to go! Yippee!
I talked to Dr. LePichon today - just about some random questions we had. The last time we talked he mentioned maybe getting her in for another EEG once she's off the medicine. Since that is coming up soon and he's going to be in France for the next month or so, I wanted to get clarification on when that EEG should be before he left the country. He said that we'll have to wait for the next real opening, which will probably be in August. He reminded me that Kylie had been getting special treatment, but since there is no longer a need (as of right now) to expedite the process, we'll have to get on the "regular" schedule. Fine by us.
We also talked about some of the stuff we'll have to look out for in the coming days, months and years. Without getting too much into specifics, it was a mixed blessing. As I mentioned before, what lies ahead could be terrible (Lennox-Gastaut), but is also something that will be hard to miss. I believe his words were something along the lines of "blatant, you will know something is wrong with your child". While that is immensely scary, it also put us at ease about having to watch, and therefore question, every little move Kylie makes. We also asked if catching "what could be coming" early on would be as helpful as it was with catching the initial spasms. He told us that for better or worse, it does not make a difference when these things are noticed. Jody breathed a huge sigh of relief with that news.
Lastly, here's a little snippet of Kylie's latest favorite game.
Notice the cameo by me towards the end of the program. I'm awfully odd.
Thanks to everyone for all the thoughts and prayers. God bless!
Wednesday, June 3, 2009
The not so fun part of about this ordeal..well, none of it is fun, but the most unfun part is that it is not over, and won't be over for a few years. The unknown is definitely the most difficult to deal with, but in our case we know what the unknown can be: Lennox Gastaut. You see, all parents worry about their children, and wonder what the future holds for them. The difference between us and parents of healthy children is that we know what could be, and it is scary.
This is not meant to be a post to report sad thoughts... this is the reality of what we are going through, of what we are dealing with right now, and what we need to be on the look out for. Is this mom and dad being more paranoid? Nope, we were told by Kylie's neurologist to look for anything unsusual, all sorts of different seizures, just anything out of the ordinary. Wow, that is a lot to be looking for, especially when babies do odd things, being first time parents...we are not totally sure what is normal, and there are so many different types of seizures to learn about and then to be on the look out for.