Our Wednesday routine has changed a bit...Brian and I have started a class called Growing Kids God's Way. The girls have been staying with Austin (just Kez and Adah) and they have been having quite the time together. While sitting in our first class we got a phone call from Austin. I was so worried...he was just wondering where the sprinkles were!! Austin set up an ice cream buffet and the girls got to pick their toppings. Have I ever mentioned what a great and awesome big brother he is?
Our class is so amazing...I am enjoying time with Brian and other couples talking about the trials and joys of parenting. I get to bring Eden along too and enjoy some one on one time with her. We start out with dinner (made by one of the 6 couples) and conversation then watch the video and then dessert to follow. I am so excited to see what this 16 week study is going to do for our kids. There's nothing better then growing our kids the way God wants us to!
A friend of mine and her family rented a house on Clear Lake for a week. They came back home to work for a couple days but one of the days my friend had off work and her husband didn't so she invited the kids and I to come hang out and swim for the day. The house was so perfect and we had a lot of fun on the beach. The kids loved it! Austin and I even got to play a game of bean bags! The kids got a little nap in too! Keziah was having trouble falling asleep in the same room with Adah so we brought her downstairs and set up a little 'bed' in the corner of the living room. We told her to close her eyes for 20 minutes and then she could get up. She ended up falling asleep even with all our jabbering! Eden napped well in her stroller for one of her naps. I love that her leg is reclined! She was definitely relaxed! Thanks Epperly family for spending the day with us!
We arrived at the Eugene Mahoney State Park after a pretty uneventful drive to Nebraska. The girls took naps the second half of the drive so by the time they woke, we were almost there. We arrived in time to get settled into our rooms and then head to the meeting area for supper and fellowship. I don't think the girls were in bed until about 10 that night but they were loving the environment!
Monday we wanted to scope things out and get a plan for the week so we kept the day low key. Plus we wanted to give the girls a chance to have a good nap to start the week out with. It was SUPER hot outside so we opted to do something indoors. The campground has their own activity center so that's where we headed. It was a lot of fun for all of us! It was a big jungle gym basically. It had a ball area too that Adah just loved! After spending a couple hours there it was almost time for us to eat supper. Dad was helping prepare supper at the chuck wagon down by our meeting area which is in the campground and just as we were getting our shoes back on at the activity center he called to say he was locked out of his hotel room. It was easily at least a mile, very hilly walk back to the lodge from where my dad was at. We were surprised to even hear from him and I was worried about what his attitude would be like once we got back to him with the key. If it were me I would be grumpy that I walked all that way in almost 100 degree temps only to be locked out of the room, but we came down the stairs leading to our room and turned the corner and there he stood by the door with the biggest smile on his face as he watched his family come down the hall. I won't forget that. He definitely showed me what love is in that moment! Our group sessions at night were great. I only wish we could have been a part of them a little more. I think we got to go twice out of four nights. I am sure as the kids get older in future years this will change though. We also had morning sessions that were great too. I enjoyed them a lot because the kids got to go to their own group sessions while the adults stayed back and had small groups and got to talk about things that were a little more personal.
On Tuesday we went to the parks water park. I let Adah and Kez skip their naps that day and Brian stayed back at the lodge with Eden. I think dad had some good quiet time in his room too! It was convenient because the water park was basically a two minute drive from the lodge so when Eden needed to eat I just came over to the lodge and fed her and then put her down for a nap. She wasn't even awake by the time we got back so Brian had it pretty easy!
Wednesday was our free day meaning there were no morning and evening sessions, and no supper being prepared that day. We had breakfast a little earlier then usual and then packed our sack lunches like usual and headed for the Omaha Zoo! It was so much fun! If you ask Keziah what her favorite thing was she will start listing off every animal she saw and then realize that it ALL was her favorite! Adah will talk about the monkeys with the pink butts (I will try to get video of that!). It is pretty hilarious. She uses her hands to tell the story and gets really worked up and excited. She is telling about the monkeys that have bare pink butts...you know what I'm talking about! Although this was a very good experience for her, for some reason she ended up having a nightmare about it which I will tell you about in a little bit. At the zoo she will also tell you about the tiger that was playing with his bouncy ball and box. He really liked carrying around his box! She will also tell you about the really loud monkeys. I'm not sure of the actual kind but when they talk to each other it is super loud. She did not like that at all! And you could hear it from pretty far away even. She kept her hands over her ears until we were far enough away and couldn't hear them. So back to her nightmare...on the last night of our stay we decided to have the girls sleep in with Brian and I and Austin slept in with Gma and Gpa. This wasn't how we did it all week because we would put the girls to be in one room and then hang out in Brian and my room. However, earlier in the day they had napped in our room so they had their pillows and blankies all in our room and also with it being so late we decided to just put them to bed in our room. Anyway, in the middle of the night Adah wakes up screaming with her ears covered. She claimed the monkeys with the pink buts were coming to eat her ears. I assured her that it was fine, no need to worry and to go back to sleep. About 15 minutes later she started screaming again (thankfully through this all she never woke Eden in the pack-n-play next to me). So I go talk to her again. I tell her she's fine, nothing to be afraid of and she insists again that the monkeys with the pink butts are going to eat her ears. Again, 15 minutes later she is screaming scared so I get into bed with her and rub her back to see if I can help her fall asleep that way. After laying there a bit I look up at her to find her eyes wide open looking around. She softly says to me, "mommy, what is that noise?" That's when it hit me...daddy's snoring was scaring her!!! She thought it was the monkeys with the pink butts coming to get her! Poor girl! So I said, it's ok Adah. That's just daddy. I'm going to get up and just go tell him to stop. She insisted that I not get up because she was so scared. I finally convinced her I would be right back. I went over to Brian to tell him to roll over and she instantly popped up and exclaimed (loudly), "It's ok! It stopped, mommy!" She went right to sleep and I didn't hear from her again the rest of the night! She told us about her nightmare several times the next day!
So where was I? The zoo was a great time. It was hot but we took our time and saw everything we wanted to see. The girls were exhausted as it was day two with no naps. Adah did end up crashing on grandma while we waited on a park bench for grandpa and Austin to get off the sky lift. I am really glad we had the stroller and the wagon. It was nice to have somewhere for Eden to nap separate from where the girls needed to rest. Eden was a trooper the whole day too! We headed back to the lodge for some supper. They had a really nice restaurant right there. The girls slept all the way back from the zoo! I think I might have too!
Thursday we weren't really sure what to do. It was another hot day but being that it was our last we wanted to do something. We ended up taking some much needed good naps and then heading over to the miniature golf course right there in the park. Adah was done after just a couple holes (so was I), but the rest of them enjoyed it. I joined back in somewhere along the way and even got a hole in one! Keziah is at a fun age where she doesn't really remember doing this kind of stuff in previous years so she is sort of doing it for the first time. She really had a lot of fun! We ended the day with nice cool baths and some air conditioning!! Mom and dad were a little burnt out so they decided it would be alright for me to put Eden to bed and go back to the evening session with the other two girls. I knew it would be a late night for them but since it was the last night I wanted to make the most of it! We talked about where the next trip would take us and some things we should do different/same. We will see where the next trip takes us!
Friday we headed down to the camp for some continental breakfast. They went into Omaha and got Panara bread bagels and some donuts. We were free to stick around the camp and do whatever but we were ready to get on the road. We went back to the lodge and packed up all our stuff. We stopped in Omaha at The Pizza Machine (highly recommend) to eat lunch and let the kids run off some energy before the long drive back home. I have a video down below of the girls riding one of the rides. Austin had a lot of fun doing go carts and playing different games. He had a card that allowed him to play any games as much as he wanted for 90 minutes. We ate lunch first and then got down to business! For the girls we just bought some tokens to play. There is an entire area made for just Kezzie and Adah's age. It was a good way to end the week! And after a good nursing for Eden, we all piled in the car for naps and headed back to mom and dad's!
I have a few things that stuck out to me through the week. One was watching Keziah get so excited to share with others. My mom bought a 6 or 8 pack of bubbles when they stopped at the store early in the week. She thought the girls would enjoy them while we were sitting at the meeting area. Kezzie asked her if she could share them. My mom obliged. Keziah was so excited! No, I mean, she was super excited! She got them all out of their packages. She organized them by color. She put them back in the sack. She would get them back out and at one point attempted to open them all and take off the seal under the cap. She could not wait to hand them out. We let her take them with to supper and told her after supper she could hand them out. She almost forgot to keep one for herself! It was so sweet to see her giving to others and being so excited about it!
Another moment I don't want to forget is when we first got there on Sunday and were sitting in our lawn chairs after supper just talking to people and waiting for our group session to start (@ 7:45ish) a lady named Kristeen came up to me. She knew me somehow but I wasn't really sure of who she was and she saw me holding Eden. She got down at eye level with Eden and very intentionally looked at her and told her how beautiful she is and wonderful and how much God loves her and how much she has been praying for her. It brought tears to my eyes. I am so amazed and so thankful for all the people who have and are still praying for her. It meant so much to me to have someone come tell Eden that.
I had a proud moment too when a women making conversation with Keziah was asking her name and how old she was and then said, "Wow, you have beautiful eyelashes. Who do you get those eyelashes from? Your mommy? Or your daddy?" Kezzie replied by acting like both of those questions were ridiculous saying, "No, I get my eyelashes from God (you silly)!"
I don't have much to say about Austin other than God has had His hand on him all summer and especially on this trip. I always worry about Austin having fun and not feeling like everything is for the younger kids. There were many kids his age on the trip. He made some really good friendships. I hardly saw him every night because he played baseball with his friends every chance he got. He even got asked to hang out by the campfire with a family one night. He had a really good time! And I am so thankful!
Here is a video one of the guys put together after requesting pictures from everyone who attended. It turned out really well (unlike me, he actually puts music to his videos)! There was a kiddie parade one of the nights we missed the evening group. I guess it was a pretty big deal! You will get a glimpse of that in this video! It was just such a neat thing to be around other believers of Christ, just doing life and having fun together! I can't wait to see where we go in another 2 years! I am also posting my own video of pictures from the week and then also a video of our trip to the zoo if you would like to see that!
The kids had a blast at the zoo...I took so many pictures basically just so they can look at them over and over. Don't feel like you have to watch through this one but the animals are really neat to look at!
Here is the Pizza Machine video. We went a couple years ago before Adah was born and we had a lot of fun so we wanted to go before heading home. In this video my mom and I couldn't stop laughing because Adah was screaming just because everyone else was but she wouldn't do it when everyone else did she would do it a second later. And it wasn't like a regular scream, it was like a bird chirping scream...it was just hilarious! One of those things where you had to be there!
Eden is growing so much! She had some major growth spurts this month in length especially! Eden is able to roll over from her back to her tummy over her left shoulder. She can continue onto her back from tummy rolling over her right shoulder. She can't seem to get it going the other way though. If she tries she just ends up scooting herself and you can tell that frustrates her! She isn't able to sit up yet but definitely has the trunk support needed for it. She doesn't panic when she starts to tip over meaning she doesn't put her hands down to catch herself. We haven't started any other solids yet but are really thinking about it as Eden is not a happy camper if we are sitting at the table eating and she isn't. She is watching our every bite and I can tell she wants to do what we are doing! Eden is sleeping through the night and still getting 6 nursings a day with her last being right before I go to bed (I am still waking her for a dream feed). She wakes between 6 and 7, takes a nap by 9, sleeps for an hour or two and then up until 1ish. She will then sleep sometimes 3-3.5 hours for her afternoon nap. She is able to stay up until bedtime at 7:30. It is so nice to have her on a schedule, especially when you have other little ones in the house. Speaking of the other littles (and big boy), Eden absolutely ADORES her siblings. She squawks and squeals at them with the biggest smile every time. I love it! She will turn her head and instantly stop nursing if she can even hear their voice from anywhere in the house. That can sometimes be a bit frustrating!
Eden continues to be healthy and seizure free. More updates on that in other posts. God is good! Enjoy the pictures!
Eden enjoying a little bouncing at Gma and Gpa Uglum's house! She can't get enough of these bouncers. All smiles!
We started Eden on cereal 6-30-12 She wasn't sure at first but did better as the days went on. Now two weeks later we have backed off as she is showing less interest. I think we are going to try veggies soon.
I don't talk much about Eden's physical therapy, but here goes...
Here is Eden in her fashionable 'hip helpers'. They are basically just shorts that have a seam sewn down the center to keep the hips together. She surprisingly doesn't mind them. They are helpful when she is both on her back and tummy but mostly when she is on her tummy. They help her use other muscles while she is moving around and playing. She is still able to roll in them too. And the obvious is that it helps keep her legs from going into that frog leg position which is a huge problem for her! We love our physical and occupational therapy ladies. Whenever we are scheduled for a visit the girls know them not by their names but by calling them 'the ladies'. They are so good with Eden and always have a positive and uplifting attitude. Not to mention that they are excellent at what they do. They do a great job of teaching me ways to work with her (besides being tolerant of being bombarded by Kez and Adah!). We are currently working on Eden putting weight on her arms, sitting up, tummy time and lifting up on her arms, a side sit position, reaching for things, and of course learning to roll to the other side and not just the one side. We are finding that Eden is comfortable reaching over her body with her right hand and that is why she is able to roll over that way but she doesn't like to reach over with her left. I would be surprised if Eden became a lefty someday! Eden is also more comfortable when she has support. She is very strong but is scared. If she can feel your touch and know you are there to catch her if she falls then she will do so much more then if you have her try to do it herself. Sitting up, for example, feels so scary to her and she will wobble all over if you don't have your hands by her because she is almost shaking with fear but if you put your touch on her hips or under her arms she will reach out for toys and sit up tall and strong. Same with on her belly. She isn't comfortable with voluntarily getting up on her hands but will do it with your hands under her chest or even just on her sides. She is amazing and it is so fun to watch her learn. I think her success will come when we learn how she learns best. For now occupational therapy comes with physical therapy once a month but physical therapy is coming twice a month. I am so thankful that we have these services offered to us as not everyone does. They both come because of the diagnosis of Agenisis of the Corpus Collosum. I will try to post more on her progress as the months go on!
We had a great day celebrating dad and all his accomplishments throughout the last many years! He is an amazingly hard worker and never complains! I love my daddy to pieces! Soooo happy he doesn't have to go to work in a factory anymore! Happy Retirement dad!
He is starting off his retirement with a week long vacation planned starting tomorrow with my family! I am pretty sure he already has plans to head to the river when he returns too!
Today was a long day...
We took the kids to CF for my mom to watch them. Brian's parents were out of town so they weren't able to do it this time. We got the girls to mom and dad's by 10ish. I nursed Eden and then we hopped in the car for our long drive. I think the day just felt that much longer since we had to run south before going back north, but it was worth it! I love and appreciate both sets of our parents for the help they provide in times such as these. It allows us to just focus on Eden completely! We were trying to leave in time to plan for stops to nurse Eden and to feed ourselves. We ended up arriving an hour early so we found where we needed to go and then went back to a home depot we saw on our way that was just a couple minutes away (big purchase-some lawn chairs!). Our appointment was at 3:45 and I think we walked out of there shortly before 5:30. We had so many questions and she never made us feel like we were wasting her time. Dr. Debbie Song told us in her opinion it would be ok to wait on the surgery. She said her brain tissue doesn't appear to be under any pressure right now. She showed us Eden's scans and said that if the tissue was under pressure it would just be flat, there wouldn't be any hills and valleys like we see on the scan. Her ventricles are very large, however, so she did say that it would be pretty impossible for her to get through life with ventricles that large, meaning she will need a shunt eventually. One of them is quite a bit larger then the other and the brain tissue is very minimal around it. It looks scary...I'm not going to lie. But I still feel like God is still telling me to hold off doing the surgery. Dr. Song's suggestion to us was to do another MRI in 6 months just to watch everything and make sure it's staying stable, but that we wouldn't necessarily say that it was time even after that. I really liked it when she walked in (us having been in the car for so long we kind of took over the room and just spread out Eden and myself on the floor playing with toys all around) and right away saw one of Eden's toys and said, "Oh, a sofi the giraffe...we know all about that one at our house!" I just felt like she could relate to us better than our other doctor. And when she said, "if it were my daughter...this is what I would do", I believed her. I felt overjoyed to be there and so thankful for her and her kindness. She said there isn't ever really going to be a time we decide is the best time for surgery. It is just going to be best to get her a little older. But at the same time we can't ignore that she has enlarged ventricles, we need to be monitoring it by doing periodic MRIs. I haven't mentioned anything about what she said about the cyst that is in there. This seemed to be a pretty big concern of Dr. Menezes (our first opinion). I think he was just being cautious in saying that if that cyst would need to be removed then there can't be any pressure from the ventricles on the brain tissue. He said the brain tissue needs to be lax so he can lift it out of the way to get to the cyst. Dr. Song said that type of cyst is really hard to get to and is rarely rarely removed. It's not growing so she said it will not need removed unless it would start causing seizures that we could tell were being caused by that cyst. She didn't want to tell us what to do and said we are welcome to come back to her if we decide our other doctor isn't a good fit. She was very clear in saying that we need to like our neurosurgeon because if/when she has the surgery we are going to get to know our surgeon very well and have a close relationship with them. I am not comfortable with Dr. Menezes but he is the best that we have found and I think he would do the best job at it. We are just trying to take it one day at a time. I find myself praying the Lord's prayer several times a day. In that prayer it says, "Give us this day our daily bread." meaning, give me just what I need for this day, Lord. I find so much peace in that and am able to enjoy Eden much more when I am not worrying about the things I have no control over anyway! God is so good to have put Dr. Song in our lives! We'll keep you posted on what Brian and I actually end up agreeing to do (since Brian still isn't convinced he wants to cancel Eden's surgery). Pray that God's will is done!
Isn't she such a little doll! I must say that the middle picture is a little deceiving because she isn't quite sitting up on her own yet. I was able to get her steady enough to snap the picture though!
We didn't have our lovely Austin around this year so we decided not to participate in any fireworks display, but we did get invited to our neighbors house (the neighbor in our back yard) for a backyard bbq last night. It was a really hot evening but a lot of fun. They had a little baby pool set up so we walked over with the kids in their suits. It was pretty convenient too since Eden goes to bed by 7:30. I was able to go home and nurse her and put her to bed and then bring the baby monitor outside with me. The other two were up much later then usual but they had fun playing with the other kids there and slept like a rock. Thanks for having us over Staci and Nick! Happy Fourth of July!
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!
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!
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!
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!
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!
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!!
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:
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!
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!
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!
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.
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!
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!
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!
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.
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!
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!
