Wonderful news!!!

Dad announced today at our weekly Sunday dinner that he was retiring! I couldn't be happier!  His last day of work is June 12th but has four weeks of vacation to use up so he will tack that on after that date.  He will officially be retired on his 62nd birthday which is July 12th!  He has worked at Viking for almost 44 years.  He SOOOO deserves this.  I am so happy for him (and mom).  Lots more time for fishing and grandkids and garden work!

Coyles Visit...

Mat and Steph came for another visit this month.  We celebrated Steph's birthday and just hung out together!  The kids watched a movie since it was rainy out.  Here is Aunt Steph with Eden.

And Mat had a good time testing out different setting on his iPhone camera.

 

It's always good to see the Coyle family!

Another EEG...

Today we had to go in for a check up to see how Eden is doing with her seizure medication and have another EEG.  She did much better this time!  She was much happier and tolerable.  The tech who put all her wires on did it a little different and much more efficiently.  The guy who did it before wasn't bad, he was just new so he was VERY thorough and shaky (not to mention he had a finger that was numb and useless) and did everything by the book.  The tech we had today was quick and did just as good a job.  I think Eden was all hooked up in less then 20 minutes!  She was getting irritable but nothing like last time.  We got her all swaddled but it took a bit to get her to fall asleep.  Once she was asleep they only let her sleep a half hour and then made me wake her up to see her brain waves in awake mode.  She was not happy!  She screamed for a long time.  It was really hard to settle her because she was so over-tired.  By the time we got her blood pressure checked it was something like 116/67.  Dr. Himali and Dr. Matthews weren't too concerned about it being that she was just super upset.  Also they aren't going to put her on any blood pressure medicine because we are going to start tapering her off the steroids!!!  The EEG showed a little bit of high voltage but still not considered hypsarrhythmia.  God is so good!  So we continue on with the 40mg until Sunday the 29th, then starting Monday we go down to 30mg, then Monday the 7th we go down to 20mg, then Monday the 14th we go down to10mg, then Monday the 21st we go down to 10mg every other day for four doses, then the 28th we go down to 5mg every other day for 4 doses and then we STOP!!!  So by June 3, Lord willing, she will be taking  her last dose!!  If her seizures were to return we would go back up to 40mg/day.  If that doesn't take care of the seizures then they would up it to 60mg and keep her on it for a longer period of time before trying to taper it again.  The doctor did say that they would only try the steroid a second time and then go onto another medication.  She also said that the same drug doesn't always work again so we may not see the same results another time around.  She also laid it all out there by saying we were at an increased risk for seeing the seizures return.  She said that sometimes when you don't see a lot of side effects it means the body isn't really absorbing it and using it the way it needs to so they may return before she is even off the steroid completely.  I should have told her that we have been praying for the side effects to be minimal!!  God is protecting her little body!  And let me be clear, we have seen side effects...I just think I don't portray them as horrible because I tend to be a positive person and well, the alternative is seizures and side effects are certainly better than that!  We are just supposed to be watching for any type of seizures.  The doctor said if they return, it doesn't necessarily mean they will come in the same form either.  I'm excited yet nervous!  Pray, pray, pray for us and especially her!

Weight: 12 lbs 7 oz. (yes, she has gained a bunch lately!)
Height: 24"

Eden is 4 MONTHS!!

Eden turned 4 months old on the 14th, but today (4-17-12) she had her check up!  We decided not to do shots since she is still trying to get established with her steroids.  She is looking great with everything else developmentally and growth wise.  She is smiling, cooing, laughing, reaching, etc.  We will have to come back to get some blood work done as well as to get her shots in a few more days.

Eden weighed in at 11 lbs. 12.5oz.  and measured 24" long.  Her head was 41.5cm and her chest was 37cm.

UPDATE***I took Eden in yesterday to get her blood work.  She had to have her electrolytes checked to see how she was handling the steroid.  Her levels looked normal.  One thing Dr. Himali (our neurologist fellow in IC) said is that the lab tech must have squeezed it out of her heel (which she did) because her potassium level was very high.  It probably should have been drawn out through her arm, but Dr. Himali said it was fine, we didn't need to re-do it.

I took Eden in today (4-24-12) to get her 4 month old shots.  She handled them quite well!  We also had to get her blood pressure checked since I was supposed to do that yesterday when I got her blood drawn.  The steroids can also cause her bp to go way up so they need to check on that as well.  It was something like 93/67 or 97/63...I can't remember!  All I know is it is pretty normal and nothing to be concerned about for now!

On the 14th (the day before my birthday and the day Eden turned 4 months), Brian took all of the kids to town to pick out a card and gift for me.  He left Eden and I home by ourselves.  It was HEAVEN!  We cuddled in the chair the whole time they were gone (almost an hour).  When they got home Adah instantly took to cuddling with us and even brought her babies to fall asleep on her like Eden did on me!  She is my little miss mommy!

Austin went to all the effort of setting up our small camping tent in our living room and put all kinds of pillows and blankets in there and then set up a movie for him and the girls.  This is in an attempt to keep the girls out of my hair as a gift to me on my birthday!  I only liked it for a little while!!!  Have I mentioned that Austin is such a sweetie!

Keziah is 4years + 5 MONTHS!!

I just realized I haven't taken pictures of Keziah in four months!  I mean, I DO take pictures (more than I should probably) but not of her in her chair for her month posts!  So here she is.  I will try to write some things about her in the days to come.  For now just enjoy her sweet smile and silly faces!

Eden milestone...

Eden rolled over today!!  I put her on her belly and she rolled over.  I did it again and the same thing.  She did it like 5 times in a row!!

Bennett turns four!!

It was a great time celebrating Bennett turning 4.  It is so amazing how far he has come in his short life!  The life that doctors weren't expecting to last long.  He has surprised us all with his strength and determination.  His sweet yet persistent personality is so much fun!  I can't wait to see what this year brings for him!  We love you so much Bennett James!  Happy 4th Birthday!

Iowa City Check-Up...

Eden had a check up today (4-19-12) in Iowa City.  We had to have an MRI done at 10:30.  Then we headed up to see the doctor.  The radiologist hadn't read them yet but the PA told us there didn't look to be any changes.  She thought that maybe there was even a little improvement!  The cyst on her brain might even be a little smaller.  She said she would call if the radiologist had anything else to say about it.  They didn't say when they wanted to see us back but I am guessing it would be in the next 4-6 months. 
**UPDATE**  We got a call today (4-20-12) and the doctor said the radiologist read Eden's MRI and he believes that the left ventricle is larger then before.  He wants to see her in a month to do a full sedated MRI.  They are talking about having to do a shunt and even mentioned the possibility of removing that cyst in the long run.  I feel scared all over again.  I thought yesterday went so well, but now this...

We had a lot of time to kill in between apts. so we got to go sit down for lunch at Old Chicago.  It was a nice relaxing meal!  Eden 'talked' in her car seat.  She seems to have found her voice today!  She does this high pitch squeal.  She takes a deep breath and lets it out and keeps going until she is out of air!  It's so cute...and loud!  She wore herself out while we were eating so we had some quiet time too!  We ended up letting her take a long nap in the car before going into the hospital for our next apt. at 3:30.

We saw Ophthalmology at 3:30.  Dr. Drack checked her eyes for tracking things and said she was seeing very well.  She tested her vision and said she is a bit far sighted and has an astigmatism.  She isn't worried about either.  She just told us to watch for her eyes going crossed.  They didn't have to pin her eyes open this time to scan them but they did still have to dilate them.  Instead they used a tiny device and were able to see that her left eye is still completely healthy and her right eye is still the same.  She was extremely happy with her sight.  She even used the word 'mild' (as in she thinks Eden has a 'mild' case of Aicardi syndrome).  We are praying for this to be the case!  In her twenty years of service she said she has maybe seen a handful of girls with Aicardi.  It's nice to see someone who has at least seen it before as it is a really rare syndrome!  We don't have to go back to see her until the end of September!

God is so good!  Another great day!

Weight: 12 lbs. 2oz.
Height: 24"

Austin's track meet!

It is SOOO much fun to watch Austin run in his meets.  I had the privilege of going to this home meet.  I hope I get another chance to see him run again.  I am one very proud momma!  It was a beautiful day for us to sit in the stands!  Keziah forgot her sunglasses so she borrowed mine!

 Austin got first in the 100m dash...

This is the 4 x 200m.  His team got first in this also... 

Steroid update!

I called today as instructed to do if Eden was still having seizures.  The nurse I talked to was really surprised to hear from me.  They were pretty confident that the steroid was going to work.  She wanted to know what dose she was at (because instead of switching to a different med they would up the steroid to a higher dose) and asked me to read her what was on the bottle.  Before I could get to the fridge to look she said, 'oh never mind I have it right here.'  She rattled off some numbers.  Before I put the bottle back in the fridge I asked her if she still wanted me to read her anything off the bottle.  To which she replied, 'yeah, why don't you tell me what the numbers are at the bottom.'  I read her the numbers and she said, 'I am so sorry, Erin.  That dose is completely wrong.'  I couldn't believe it. She said Eden was getting 8mg/day and should have been getting 40mg/day.  I thought I was worried before!  My worry just quadrupled!  So for the last 5 days Eden has been taking a much lesser dose than she should have.  Praise God that we figured it out.  Brian quickly went to the pharmacy and picked up the right concentration.  The pharmacy was very apologetic and after getting past our anger, we understand people make mistakes.  We are just thankful Eden is ok so no harm done.  God has his hand of protection on her!  So the nurse told me what to give her to get her to a full dose for today since I already gave her the wrong dose this morning.  She had a seizure one hour after she had the full dose but hasn't had anymore today.  We are so hopeful that this is going to take care of them.  I am just praying so much that the side effects are minimal!  I will keep you updated!

My Birthday!!

This is my beautiful family.  EVERYONE is here except my oldest sister Casey (however, her husband and two kids are pictured).  I cannot believe we got everyone in the picture.  I am so blessed to have all these people to celebrate turning another year older with!  Mom cooked another great lunch but went a little above and beyond and made bbq'd baby back ribs to celebrate mine and Adam's birthdays!

Eden update...

Eden started having seizures on Thursday April 5th.  She typically has up to 3 clusters a day.  By 'cluster' I mean each time she clinches down, she is having a seizure.  She will clinch down numerous times for 3-7 minutes at a time, up to 3 times a day.  By Wednesday the 11th we were in Iowa City for an EEG.  I tried to talk to someone on Saturday but the doctor wasn't available and the person I did talk to said we could come and be admitted to the hospital if we wanted.  With Easter the next day we decided to just wait until Monday to call again.  Another day was wasted as we waited for the doctor to call us back.  Monday night while we were at gymnastics Eden had a seizure and Shea (her kids attend gymnastics also) who is Eden's doctor, was able to see it.  She was concerned and said she would call the next morning too.  I called right away in the morning and was told I would get a call back right away and I did.  That's when Eden got scheduled for her EEG.  At her EEG it was awful.  They had us lay her down on the bed where they wrapped her in a blanket to keep her arms out of the way.  The guy drew all over her head to mark where to put the wires.  She did pretty well during most of this time as long as Brian and I talked to her.  She got really tired of it toward the end though.  It took about 45 minutes to get her all hooked up.  They have to use special, really smelly glue and then use really cold forceful air to dry on the wires.  She hated it and cried so hard the whole time.  She was more than ready to sleep by the time the study started which is how they wanted her.  She conked right out!  It was the sweetest thing.  I will never forget the way she looked that next hour.  Aside from the wires coming out of her head she was so sweet!  I rocked her to sleep in my arms and then laid her on the bed and I laid next to her.  I stared at her almost the whole time.  She woke up herself after about 45 minutes which is good because they need to also monitor her while she's awake after she's been sleeping.  After getting all the wires taken off (they use an even smellier chemical to get them off to dissolve the glue and she cried the entire time again) we headed to our appointment with the doctor.  They said she hadn't entered into hypsarrhythmia (a pattern of high voltages that are best described as a constant seizure even if you can't physically see it) yet so that was excellent news, but that her EEG definitely wasn't normal.  After seeing the video we recorded of her having them and looking over the results of the EEG, they were confident that what she was/is having are infantile spasms.  This was the missing piece needed to give Eden a sure diagnosis of Aicardi Syndrome, so as scary as it is, it has been confirmed.  The doctor is having her start a very high dose of steroids to try to stop the seizures.  She has to take 40mg/day along with 5mg of Prilosec to protect her tummy.  This is no small feat.  I feel like she is having a meal when she takes all this medicine.  And she has to have it first thing in the morning so it is hard to give her prilosec and then wait a half hour for that to work and then feed her and give her the steroid.  The steroid is about 1.5 teaspons and the prilosec I have to mix with 2 Tablespoons of water and then give it to her.  The first time I gave her all this I was so angry and upset.  The steroid was supposedly supposed to be cold according to the pharmacy (I later found out it does not have to be refrigerated), and it took me over 20 minutes to get her to take all her prilosec.  I called the pharmacy the next day as I am reading the directions on the box for the prilosec and it says 2 teaspoons.  The pharmacy confirmed that 2 teaspoons was correct...big difference people!  It is now Friday and she is still having seizures.  They said it could take 3-4 days before we see some results.  Sunday would be day four but I will wait and call Monday if she is still having them.  We really need prayers that the steroid begins to work and that the side effects are minimal.  The doctor said side effects she could receive from the prednisone are: fussiness, hunger, sleeplessness, puffiness (especially in the face), stomach ulcers, etc.  I am so worried to give her so much medicine.  Pray for peace for both Brian and I.  I know God has a plan for our little girl, it's just hard to rest in that sometimes.  If you are interested, here is a video of her having a cluster of seizures...

Stats at EEG on April 11th are as follows:

Weight: 11 lbs 8.5 oz.

Height: 24"

Head: 41.5cm

Hives

Adah broke out in hives last night all over her body.  It was horrible in the knee/behind the legs/ankle regions and a little on her face.  She was up until 11:30.  She wasn't falling asleep even though Kez already had and started crying around 10.  Brian went up and she said her knee itched.  He pulled the covers up and told her to go to sleep but a couple minutes later she cried again.  I went up there to investigate a little more and after taking her into the bathroom and turning on the lights I discovered she was bright red and covered in bumps that looked like bee stings.  I gave her benadryl and put calamine lotion all over it.  She had strawberries with her lunch and a pb&j sandwich (with homemade strawberry jam no less).  We aren't sure otherwise what would have caused it. When she woke up this morning she was completely normal.  I think we will stay away from the strawberries for a while!

Easter Sunday!

Jesus has risen!  It's Easter Sunday and what a great day!  We woke to donuts from daddy and fun baskets then headed to church in Cedar Falls.  Who can resist these sweet faces (and the top of Austin's head).  Easter continues to be my favorite holiday.  It amazes me that God gave his only Son to die on the cross for us.   I can't imagine giving up one of my kids for anybody.

Here we are at my parents' house.  What a blast having an egg hunt!  It was such an amazingly beautiful day.  I think we had well over a hundred eggs (I can't remember the exact count) filled with candy and money.  The kids had so much fun!  Emily (my sister) had a giant egg just for Austin and only 5 minutes after hiding it couldn't find it anywhere.  That picture on the bottom is Austin looking for it among some brush.  They ended up looking for it for at least 15 minutes before they found it.  It was pretty funny to watch them (slowly everyone joined in to look).

My sweet sweet family!  Love these guys to death!

So cute!

If you are having a bad day, just take a good look at this sweet face...you will smile the rest of the day!

Easter Egg Hunt

Here we are at the annual New Hampton Easter Egg Hunt!  The girls always have a blast.  You stand behind the flags and when the firetruck sounds you have to take off and grab as many eggs as you can.  There are a couple in each age group that contain a ticket for a big prize and the rest contain candy.  I think the girls ended up with about 4 eggs each!!  It's over before you can blink!  Afterwards you can climb in the firetruck and pet the real bunny and even get your picture taken with the Easter Bunny!  It's great to have friends like Abbi, Beau and Gracie to do fun things like this with!  A great start to celebrating Easter weekend (even if it was really cold)!

Gymnastics

The girls started gymnastics tonight and absolutely LOVE it.  It's so much fun to watch them too!  The downfall is we have to drive to Waverly for it, but it's only once a week so it's not so bad!  They do a lot of stretching, rolling and jumping.  They both do really well, but I must say Keziah is so much like her dad in the way that he is really good at sports.  She is a natural!  Adah is young still, but tries her best and follows directions very well!  The rest of the week they spend much of their time doing the same stuff at home because they like it so much!

A great weekend...

We started out the weekend with a baby shower for a great friend of mine.  I originally went to it by myself (with Eden) but when I got there, she had her daughter there that is Kezzie's age so I went back home and got the two girls.  While at the party the girls got to play with a kitty, have a picnic and play with friends.  And I got to have some adult conversation. 

That evening we headed to CF to spend some time with my sisters and their kids.  We had a nice supper at I-Hop even though the kids got a little crazy and were wrestling in between the tables!  We kind of wondered if we were crazy to be there with 9 kids, 8 of which are 5 or younger!  We then headed over to the crossroads mall where we planned on going to the teddy bear connection shop but it closed.  Jamie had gotten all the kids gift cards to that place for Christmas but unfortunately they went out of business.  We did however see the Easter bunny and play in the climbing area and ride the carousel, so it wasn't all a loss!  I think the kids just enjoyed being together and I certainly enjoyed hanging out with my seeesters!  Brian, Keith and Adam were having some fun of their own playing cards at Adam's brother's house.

On Sunday we went to church and then went back to mom and dad's for lunch and Easter egg dying and ice cream sandwich eating!!

On Sunday night I stayed at mom and dad's because Emily's babysitter was having surgery so she wasn't taking kids and Emily really needed somebody for the two younger ones for Monday.  I said of course I would do it!  Austin headed home with Brian and I stayed behind with the three girls...I had so much fun with those kiddos and the day just flew by!  Alanna LOVES to put on shoes!  The girls really enjoyed playing with play dough.  And Bennett just couldn't get enough of Eden!

A funny thing Kez and Benne said: They were playing with some sort of building thing (like knex or something) and they had one long red piece each.  They kept carrying them around in their mouths.  I asked them what it was supposed to be to which they responded saying, "it makes us talk like a man."  Not sure what that meant, but it was pretty funny!