T-ball!

First day of T-ball (6/4)!

Eden is loving this being outside stuff!

Friend Henry playing by her side!

One of the last few days of t-ball (6/19)! Kezzie is wearing down, but still enjoys it! She is rather good at it! She always complains that she doesn't want to hit off the tee. She prefers daddy pitching it to her!  She also complains that she doesn't want to do so much work and that she doesn't want to do it all.  There are stations and she only likes certain ones so she would prefer only doing the ones she likes!  She especially doesn't like when the coach rolls the ball on the ground and she has to catch it.

(6/21)

Yesterday (6/27) was her last day and she was pretty happy!  I think she was just wore out on it!  I asked her if she was going to miss t-ball and she said no.  I asked her what she didn't like about it and she simply stated, 'everything...except the hands in' (they always put their hands in at the end and yell go Chickasaws).  I asked her why that was her favorite and she said it was because it was at the end and that meant it was time to go home!  I guess we will re-think t-ball for next year!

Swimming with friends!

We had the privilege of swimming at a friends house today.  We were in CF and needed something to do with our hot morning so I called Austin's old daycare provider (from when we lived in CF) and she was more than thrilled to have us come spend the morning with her.  She still does daycare so there were other kids there to play with too!  The girls had a ton of fun and Austin had a blast from the past!  Ha! Ha!  She's been more than a daycare provider to me and to Austin too.  She is such a sweet person and fantastic teacher.  She truly cares about all her daycare kids. She taught Austin so many things in the time that he spent with her.  I think she was the one who mainly potty trained him, she taught him that food grows in the ground and it's ok to snack on it while picking it (he still talks about her garden to this day), she taught him how to be the great swimmer he is today, she let him be a boy and catch frogs and play in dirt and she taught him how to love others (I am certain she had a hand in his sweet personality).  I am honored to be able to call her my friend!

Here is Keziah showing off putting her face in the water.  She says she's diving!

Austin was getting creative and went down on  his knees.  Keziah is getting lessons on how to do a back float.  Eden looks so prim and proper with her hands folded in front of her!  Adah actually climbed up the slide to go down and Austin offered to go with her.  She is my little dare devil! 

These baby toads were everywhere!  The daycare kids knew right where to find them and would round up several at a time for the girls to play with.  They loved it!

So tiny!

Eden wasn't a huge fan of the water but warmed up to it by the end!  Such a cutie!

Me and my girls!  I would really like to include Austin in these pictures too, but he just won't have it!  Trust me...I try!

Innocent Adah...

Yeah right.  She seems so innocent, but she is so sneaky.  I can hardly keep up with her these days.  I call it curiosity for the way things work...she's just too cute to call naughty!

This was the mess she made the other day while she was actually already in time out.  Austin had put his overnight bag next to the stairs to go down to his room but it also happens to be where the girls sit in time out.  She was digging through his bag and found his green gel toothpaste.  Just as I was about to come around the corner to tell her she could come out of time out she was holding the tube up-side-down and squirted it out onto the carpet as if she were getting ready to paint a masterpiece.  She got a little more than time out for that  one!

This picture doesn't do any justice because this is after I scrubbed it with a Norwex clothe, but Adah came down from bed one morning  and I noticed a little marker on her hand.  I had to think a bit but remembered that I had a sharpie on the steps ready to go upstairs and mark some borrowed clothes for Eden.

So here is our conversation: M: what's on your hand Adah?

A: marker

M: oh really, where else is there marker?

A: on the paper on the stairs AAAAAND (she always says these long drawn out 'ands') it didn't stay on the paper...I got some on the carpet too.

I was seriously thinking it would be all over the wall and banister, but she was right, it was on the carpet.  And not on the carpet like she just accidentally ran off the paper (which by the way was an important paper), it was literally scribbled on the carpet!  She must have woke up feeling really curious that morning!

Another bed change!

Eden is now taking naps during the day in her big girl crib!  She seems to do really well upstairs in her room, I am just not quite ready for an all-nighter though!  Maybe it has to do with worry (about her health/seizures) or maybe, just maybe, it might have something to do with her being my last sweet baby to have sleeping next to me at night :(  Either way, it won't be too much longer and she will be in her crib all the time.  It seems like yesterday I was making this transition with Keziah! It goes way too fast!  I think I might hold on for just a little longer!

Fireflies and Fire!

One of the best things about summer is staying up late to catch fireflies and sit by the warm fire.  I don't let Keziah stay up late very often, but tonight it was almost 10!  She caught several fireflies and had so much fun doing it.  Austin enjoyed stoking up the fire and shooting off his potato gun he's been working on!  After I got Kezzie to bed Austin and I enjoyed some time together sitting by the fire just the two of us!  We really should do this more often!

High Risk and Genetics Apt.

Eden saw the high risk (neonatology) clinic and genetics doctor in Iowa City today.  It was pretty uneventful but educational...the genetics appointment anyway!  At the high risk appointment they basically just watch Eden's development.  They tested her ability on different things.  She tracked beautifully for her age.  The nurse acted like the only thing she was concerned about or say Eden was 'behind' on was that she should be starting to catch herself when tipping in a sitting position.  Eden absolutely is not concerned when you tilt her from side to side.  She will get there though.  I am confident!  She is strong and able to sit up with support so she will be doing it on her own in no time!  We went to genetics next.  They measured her all over!  I didn't understand what they were doing it for until I got home and read the print out they gave us that went into detail about Aicardi syndrome.  Some of the characteristics of AS can be (but don't have to be) facial features out of proportion (ie: one eye smaller then the other, ears are out of proportion, pallet is raised, etc.) and the hands can be out of proportion as well so he also measured the palms of her hands and fingers.  He thought she looked normal in all of her measurements!! 
When Eden was in the hospital (during her stay in the NICU) they did a chromosome test (CMA).  This stuff just fascinates me!!  They are able to break down her 26 chromosomes and see if there is anything missing/duplicated/mutated.  They were able to tell us that on chromosome 1 and 3 there was either a duplication or a missing line.  They said that didn't match any other Aicardi girls that have had this test done so they couldn't specifically say that she definitely has AS.  There is no way to test for it. But it did tell us that she doesn't have anything else that could have shown up.  It was all very interesting.  However, I don't know if I would say it was worth the 2.5 hour drive to get there!  We will continue to see high risk but we don't have any apts. set to see genetics again.  We will see high risk November 1st for another evaluation.  I am ok with uneventful...let's keep that up!!

Family and lots of fun!

Today we enjoyed some much needed time with my dad's side of the family.  My cousin Rebecca lives far away with her husband and four kids so we don't see them very often.  She recently had twin girls (a month younger then Eden) so it was awesome that we got to see them while they were home.  Upper left corner is me with one of my cousins whom I don't see often enough either (and she only lives in Dubuque).  Next photo is all of us gathered in what little shade we could find.  Aria loved playing with the ladder golf balls and crawling around on the cement (ouch)! The boys were hiding behind the house filling water balloons and plotting attacks on the girls!  Adah is going to kill me for that picture some day!  We weren't aware of the pool there so we didn't bring suits.  We started her out in her clothes but she didn't like the feeling of them wet on her skin so she got into her 'birthday suit'!  Also a picture of the ever so adorable twins.  And last a picture of my sweet Kezzie!  It was REALLY hot, but sooo great to see everybody!  

Here is a video of photos that my aunt Jill took if you're interested:

My Animoto Video

Tree house!

It's almost done but we just couldn't wait any longer.  Today we decided to have a subway picnic in it!  Austin enjoyed it also but wouldn't let me take his picture (pretty typical)!

Here is our tree house in it's progress to date!

A good friend of Brian's (Tony Straw) is the one building this.  We have had the idea to build one since winter of '11 but decided to wait until this spring to get anything started.  We were thinking about hiring someone but then talked to Tony who works only on the weekends and asked him if he would be interested in helping us out.  He was excited and drew up some plans.  It wasn't long before he got started!  He is doing an AWESOME job!  Thanks Tony!  Keep up the great work!

Floor time!

This is brought to you...just because I can!  Isn't she just adorable?

Airport Lake Beach!

Somehow I got plenty of pictures of Adah and hardly any of the other two girls (Austin was gone).  We all had such a blast.  We arrived right after naps and stayed until 7:30!  It was such a beautiful day and we met the Epperly's so it was awesome fun with friends!  Eden even took a nice little snooze in the shade!  Kezzie and Adah are getting so comfortable in the water it makes it so much fun to watch them!  My little fishies!

God's Promise

A rainbow...a great reminder of God's promise to us all!  And a great visual for taking time to teach my kiddos about God's promise!  So pretty!

Eden is 6 MONTHS!!

Eden is already a half of a year old.  I feel like we should celebrate in some way!  It is amazing how far we have come with her and how awesome she is! 

Awww...my sweet baby!  She loves to be face to face.  She will often grab Brian or my face and pull it into hers as if she is giving us a hug!

She loves looking at herself in this big mirror during bath time!

I love every roll of her!  So sweet!

 

We brought this up from the basement today.  I could not believe how well she sat up in it and how much she loved all the different toys.  And her sisters enjoyed playing with them too so it kept her even more entertained!

UPDATE:  Eden had her 6 month check up today (6-19) and she weighed in at 15 lbs. 14.5oz.  She was 25.5" and her head was 43.5 cm.  She had to have shots but tolerated them very well!  She is tracking well with what a normall 6 month old is doing, so we are elated!

Shunt surgery update...

Upon A LOT of discussion, Brian and I have decided to cancel the surgery.  It was all happening too fast and I personally wasn't comfortable with it at all.  It's such a life-changing event that I want to be sure I feel comfortable with it.  We have decided we are going to get a second opinion to try and help with this decision.  We have that apt. July 5th at 3:45 at Gillett Children's Hospital in Burnsville, MN.  We will be seeing Dr. Debbie Song.  Wish us luck and say a lot of prayers!  Brian and I really need to get on the same page.

Happy Retirement, Dad!!

After t-ball and tot-lot today we rushed back to CF for my dad's last day of work! Some guys at work made him homemade ice cream and bought a big cake.  The kids and I had pizza over at Emily's before rushing off to dad's work.  On our way in Adah tripped and fell on her knees (the third time in the same unhealed spot).  She was a wreck!  The stairs we climbed up to get to the lunch room were steel so the kids were all leery of walking up them.  With Austin's help we managed to get all the little ones safely up them!  We walked in right as dad was finishing up his speech!  Bummer!  At some point Bennett fell off his chair and was screaming, at another point Adah bumped her knee and it was in pain again and she was screaming.  I took her outside the lunch room to avoid bothering everyone and all she wanted was to go back to the car.  I think she was overwhelmed by all the burly, dirty men!  We really wanted to see dad's work area (it's been many many years since I have been to his work) and I think it was nice for him to get to show off where he worked everyday!  Austin is so impressed by his grandpa, he particularly enjoyed it.  He says he will have lived a good life if he turns out half as awesome as his grandpa and claims he is going to someday work at Viking Pump too!  The working conditions are not what a person should have to work in every day.  It's so dirty and loud.  I am so thankful that dad doesn't have to go back ever again!  Before going down into the work area we ALL had to put on safety glasses.  They don't make them child-sized so it was pretty funny!  Somehow Eden managed to fall asleep in all the chaos (and stay asleep with all the noise).  I was super proud of all the kids tolerating the loud noise.  But they were sure anxious to get out of there!  I'm so glad we were able to make it because although I am not the one who actually worked there, it was good closure for me to see the place he will no longer be going to every day!

I couldn't be any more proud to have such a hard working dad!  He has been an amazing provider for our family growing up and continues to be a solid spiritual leader as we all have our own families.  I love his sweet smile and the way you can see his pride just by looking at him.  He gives the best hugs and soft kisses and always makes sure to tell me how much he loves us.  I am so thankful that he and my mom are at a place in their lives that he is able to retire.  That job has served him well, but put so much strain on his body, it was time to get outta there!  Happy Retirement Dad!  I love you so much and am so happy for you!  Now you will have much more time to spend with the grand kids!!

Look at Keziah...she definitely fit right in with the dirt all over her face, big grin and safety glasses!  The picture of molds is all the molds dad made just this morning.  Can we say productive?!!  Adah just kept her nose plugged because it smelled awful in there!  Did I mention I am so happy my dad doesn't have to work in those conditions anymore?  Dad is technically on vacation until July 13th (the day after his 62nd birthday) but doesn't have to go back to "work" ever again!  We will celebrate with a party on July 7th from noon-3ish.  If you have time, come stop by my parents' house to congratulate him!

Cuties!

The girls wanted to have a little photo shoot out on the front porch.  I obliged as they look so darn cute in their dresses! They each wanted to have their own pictures but also wanted to have some taken together.  These girls are such good buds!  Kezzie is always willing to wrap her arm around Adah to snuggle in close for that extra sweet shot!  If you are wondering...

Adah is touching her shoulders to 'show how big her muscles are'.  The girls think that if they can touch their shoulders they have big muscles!

Sedated MRI

My curious babe!  She has gotten to know this stroller well!

We are here and sitting in the waiting room at 7AM...We stayed in a hotel last night.  Eden was not ready to settle down after a long ride in the car.  I think we were all up until about 10pm!  I woke her at 3:30 to feed her since she can't have any fluids after 4.  We are praising God that we don't have to work around her steroid and prilosec schedule since she is recently free of all her meds.  It would have been difficult to get her dosages in her since she had to have her prilosec 30 minutes before eating.  And she had to have her steroid in the morning as soon as possible.  And I don't know if it is known that we actually had this scheduled 3 weeks ago (when she was still taking her meds) but she got sick and we had to cancel it!  God's timing is perfect and he works everything (even a nasty cold) for good!

A man came and rubbed numbing cream all over her limbs where they will possibly put in her IV.  Then they wrap those areas so she doesn't put her hands in her mouth.  Purple wrap to match her purple shirt!!  We had to give it about 30 minutes before they would come get us.  She is a hungry girl since she hasn't been able to eat yet this morning!  She did amazingly well!  She didn't start fussing until right before they came and got us!  She is such a good baby!

Nervous mommy waiting with her sweetie!  I had to get a picture before they take her away!

Daddy too!

I got to rock her to 'sleep'.  They put the IV in which took all four limbs to get it.  They were going to have to use a breathing gas if they couldn't get the last one they tried.  I was just praying so hard they would get it.  They did!  She was such a good baby through it all.  I put her in my lap and sang to her and she just kind of whimpered through it all. 

After she was out, I laid her back on the bed.  She looks so helpless here.  It was hard to see her like that.  She just laid there whimpering.  Almost like a cry.  The guy said she did it the entire duration of the scan!

Here she is doing a little whimper.  She really was completely out though!

My little sweetie.  We got called back around 8 and she was done by 8:40.  We thought for sure we should be able to make our 11am apt.  The doctor thought she'd be awake within 30-60 minutes.  Not so!  She was awake a little bit around 11 so I tried to nurse her but she just couldn't do it.  She was just too tired!  They released us from the recovery area since she did drink a little.  We headed to our apt. (a little late) with a very sleepy girl and I ended up pumping before we saw the doctor.  She didn't wake up and really nurse until we got in the car to come home at almost 1:30!  I couldn't believe it!  I guess she takes this sedation thing seriously like her daddy!  He is the same way!  She nursed and then slept almost the entire way home.  Have I mentioned what a good baby she is?!  And just so beautiful too!  God had his hand of protection over her.  I am so thankful for how smooth it all went.

Now the news of how the actual appointment went...

Dr. Arnold Menezes talked with us extensively about what he saw.  He didn't see any changes at all in her ventricles or the cyst that is in there.  Good news!  However, he does feel like she needs a shunt. Bad news!  He said that the brain tissue doesn't have enough room to develop the way that it needs to.  It isn't under any pressure yet but he doesn't want it to get that way either.  One of the ventricles is incredibly large leaving only a small sliver of area around the outer part of the head for brain tissue.  If we remove some of the fluid then her brain tissue will have that much more room for growth.  He did confirm that she has complete agenisis of the corpus collosum.  He talked a little bit about the cyst in there too.  He felt that it isn't a problem right now but that if it became a problem he would want full access to it.  He doesn't think it would be very easy to get to if we don't get some of the fluid out of her ventricles.  He wants the brain tissue to be lax so he can lift it out of the way to get to where the cyst is.  It all sounds so horrible.  The second he started talking about the shunt and wanting to schedule the surgery sooner rather than later, I started praying and immediately felt a strong resistance to the idea.  Despite my feelings we went ahead and scheduled the surgery for next friday (June 15th).  They talked to us about surgery prep and what to expect with the surgery and after.  She will be hospitalized for 5-6 days.  There is a chance of infection which can be really bad.  She will have a programmable valve that will go behind her ear.  The tubing will run over her clavicle and drain the CS fluid down into her tummy.  This is all so new to us and such a shock.  I am hoping to do a bunch of research and ask a bunch of questions and either feel better about it or not do the surgery.  Brian and I have a lot to talk about!

2nd EEG and Steroid Update

Today was Eden's last day to take any prednisone.  Since I last talked about Eden starting steroids she has been completely seizure free.  On April 27th Eden had her second EEG to check her brain activity since starting the steroid.  She still hadn't entered into hypsarrhythmia but there was some abnormal brain activity present.  They even said there were areas of high voltage but didn't consider it to be hypsarrhythmia.  Eden did much better for this EEG.  The tech. was much more efficient and seemed to know exactly what she was doing.  We were doing it the second time around so we knew what to expect and that made it easier on us, I think.  Eden slept really good for about a half hour and then the tech had me wake her up to see her brain activity while she is waking up/awake.  Eden was not happy to be woken up.  It was pretty rough actually and even rougher as the tech was taking off the wires.  Eden was super over tired.  We went to our apt. and met with Dr. Matthews (head of the neurology department) and Dr. Hymali (the fellow).  They gave us a tapering schedule to start after she had been on her steroids for two weeks which was April 30th.  On that Monday we started her on 30 mg (down from 40mg), the next Monday (May 7th) she went down to 20mg, May 14 she went down to 10mg, May21st we started 10mg every other day (for 4 doses), May 29th Eden started 5mg every other day (for 4 doses) ending today!  Dr. Matthews thought Eden looked excellent developmentally and was super excited that the steroids were working so well. She didn't offer us much hope that it would keep the seizures away though. While they don't know much about seizures in Aicaridi girls, she didn't think the steroid would keep them away for long even if we do get all the way to the end of the tapering schedule.  She didn't want to see us back until November unless seizures become present again.  IF the seizures return we will try the prednisone one more time (the chances of the same medicine working again are slim) at 40mg, if that doesn't work she will bump it up to 60mg.  Either dose they will keep her on even longer and taper her off even more slowly.  If neither dose works they will try a different drug altogether.  We are so thankful for how far we have come.  God is definitely taking care of and watching over her!
A little about the steroids:  The side effects were awful.  I can look back now with thankfulness and be so glad that we are out of it, but while we were in the middle of it I was feeling extremely overwhelmed.  Eden was crabby, STARVING, tired, RAVENOUS, getting chunkier, eating all the time, smelly poops, and did I mention HUNGRY?!!  I seriously fed her about 8-10 times a day.  She got up AT LEAST once a night.  And her poop was unbelievable!  It was very obvious the last two weeks of her tapering schedule what her personality was really like because she was/is the HAPPIEST baby alive!  She has even slept through the night again the last couple days!!  God is so good!  I am praying so hard for God's will in Eden's life, but really really praying we don't have to go back to that.  It was through this all that Jesus was and still is carrying me!  I couldn't get through any of this without Him and His promises.

Arianna's First Birthday Party!

Today we celebrated Aria's first birthday!  She was super sweet and fun to watch.  She loved the giraffe ride-on toy we got her.  She also got a Dora ride-on toy from her mom and dad!  She wasn't so sure about her candle but she enjoyed her cupcake!  Happy Birthday sweet girl!  We love you!

Happy Birthday Grandma!

My grandma turned 85 years old today!  I love her so much and am so thankful for every day that we get to have her around!  She has taught me a lot of things about life, one of them being what it means to live a life for Christ.  She never forgets a birthday and always includes a well thought out Bible verse in our cards.  She always makes sure to tell us she loves us and tells me every time I see her that she is praying for me and each of my kids every day.  I believe her when she says that!  Prayer time has always been a priority in her daily routine and I think I will always remember that about her!  We celebrated the day just how she wanted and that was lunch at The Chinese Buffet with all her family there.  My aunt came up with a great idea to write on 85 cut out hearts 'why we love her' and then we gave them to her.  She loved it!  After we ate lunch we all went back to mom and dad's to spend some more time together before everyone parted ways to travel home.  It was a great day!  I am so thankful for my family and blessed to still have my grandma around to hug me tight and tell me she is praying for me!  Love you grandma!