If you are anywhere on the floor, Eden will come attack you. She loves when you get down to her level. She especially loves to tackle Keziah. Kezzie thought it was funny for a while and then she just got irritated that she couldn't get up and move around! Eden just stood there pounding on her back and trying to climb her! It's great to see a normal and healthy bond between Eden and her siblings!
Keziah is getting into crafts and drawing so much. This is one of many drawings she is creating these days. Whether it's on the iPad or regular paper, she is becoming a creative artist! Here is a picture of a monkey hanging with his bananas!
Eden had a psychological evaluation today. We knew it was probably pointless to do but we were encouraged by professionals to get it done early in Eden's life so we had a benchmark to go from. The whole reason we had to do it was to try to get Eden on Medicaid to help pay for medical bills. In order for her to get medicaid she has to be approved for one or both of two waivers. Either the Ill and Handicap waiver or the Brain Injury Waiver. So, to first determine if she qualifies for either of those we had to do a psych evaluation. We were set up for a two hour session with one of the U of I's psychologist. She wasn't very familiar with Aicardi Syndrome so she was reading up on it before we got there. She had no idea what a great miracle was going to come through her door. I think about a hundred times during the evaluation the lady couldn't even finish her sentences she was so amazed at Eden. There were so many things she did to test Eden and Eden just kept passing each one and in the process surprising us all. For example: we asked her to point to the puppy she pointed, we asked her to then point to a ball and she used her other hand that was closest to the ball to point to that. There was a test where she laid out two white napkins and hid a bracelet under one of the napkins. Eden didn't even hesitate, she just lifted up the napkin to find it. The lady then hid it under the other napkin and Eden used her other hand to lift that napkin to find it. Eden said Kitty at a picture of a cat while we were there, she was pulling herself up to the table in the room...the list goes on and on! At the end of the session, which despite our greatest efforts to fill the whole time slot only lasted a little over an hour because she was passing tests left and right, the psychologist said, 'well the good news is she is developing at a 15 month old level (she's 11 months), the bad news is you definitely don't qualify for either of the waivers!' Hey, we'll take it! We couldn't be happier or prouder! What a little miracle Eden is!
In an attempt to take a picture to put on the girls' birthday invite, I ended up getting some cute ones of them together! Here are the littles in my life!
I ended up using the picture in the middle but since Adah isn't looking at the camera I photoshopped the head from the lower left corner picture in and also removed the fan from the background. I would show you the final product but I must have deleted it after printing them off! Ooops! Just use your imagination...you seriously couldn't tell at all!
Oh how this picture says a thousand words about who Adah is! Her smile, her beautiful hair, her jammies, the way she sits in her chair, and lets not forget the giant pancake in front of her. I can't believe how fast 3 years has gone. She is getting smarter and taller by the minute!
HAPPY BIRTHDAY sweet Adah!
We celebrated the day not doing too much...Adah opened a gift from Austin (a ceramic owl that he let her pick out of his room), a Dora coloring book and Dora gymnastics movie from the rest of us! And to top the night off she got to have one of Kezzie's birthday treats from school (aren't we nice)! Hey, she'll have cake at her birthday party...she isn't too deprived!! Kezzie was at least nice enough to let her wear her birthday crown from school!
UPDATE: On January 8th Adah had her well-child visit. She weighed in at 31.5 lbs. (50th%), and was 37.5" tall (75th%). She did not have to get any shots but I have to make note that she was actually disappointed about this (I secretly think she wanted the sympathy!).
We started the morning out with a birthday to celebrate! Keziah turned 5 today! I let her pick what she wanted to eat for her birthday breakfast and she picked donuts...I should have known!! I made homemade donuts and they were delicious! We let her open her gift from us because the rest of the day we knew we would be gone to Brian's parents' house! We got her something little to open today but she will get her actual gift at her birthday party in a couple weeks. We bought her a drawing board that has dry erase markers and dry erase crayons and a bunch of stencils. She really liked it and kept busy with it most of the morning. After we got dressed we headed over to Riley and Kathy's house where Mat and Steph were there with Brady and Henry! Another great day of celebrating being thankful for so much!
UPDATE: Keziah had her 5 year well child visit on January 8th. She weighed in at 42 lbs. (50th%) and was 44.75" tall (90th%). She had to get three shots and let me tell you, she has let us know about it!
We got to hang out reading books, jumping on the bean bags, baking sugar cookies and decorating them with LOTS of sprinkles and celebrating all three girls' birthdays since Grandma and Grandpa Uglum and Mat and Steph can't make it to their birthday party.
Practicing letters with Grandma, me and my FIVE year old, isn't she a beaut?, Eden with her new toy from Mat and Steph, lots of reading books and last is Kez and Brady helping make pumpkin pie (the other kids were napping!).
The girls had a great time opening their gifts. Keziah got a new nightgown along with some coloring/crafty things. Adah got some books and stampers, Eden was very happy with her chunky puzzle!
It's time to decorate the cookies. Steph and I frosted them and each of the kids got their own tray and sprinkles...the cookies were...let's just say...colorful and sugary!
Time to sing happy birthday to my three birthday girls. Even though Eden isn't one for almost a month we still let her have a taste of the cookies! We lined the kids up and had them hold up their fingers for how old they are. For only four more days (since Adah's b-day is the 27th) we have a 5, 4, 3 and 2 year old!
The kids didn't want to put their fingers down so even as we added Austin and Eden they continued with their age. Adah was kind enough to put up two fingers for herself and one for Eden (even though she isn't one yet!). We have a pretty awesome group here! And Austin is such a trooper with all these little ones around! Don't let the enthusiastic face fool you...he really does have a good time with these guys!
We had a great Thanksgiving Day spent with all the people we are thankful for!
HAPPY THANKSGIVING EVERYONE!
The girls and I made these awesome turkeys that only Pinterest can take the credit for! Although we came up with the idea of putting the writing on the feathers! Keziah was having a hard time letting go of the fact that our turkeys weren't matching exactly with the turkeys on the computer screen (colors and placement, etc). She is a perfectionist for sure!
Adah's thankful turkey
Keziah's thankful turkey
We enjoyed playing together all day long! The kids read books, played outside, played the iPad, snuggled on the couch, played red rover red rover with Aunt Emi and hide-n-seek! It was a fun day for sure and one to be very thankful for!
Red Rover, Red Rover send Adah right over!
Devising a plan...
A plan of their own...
Let's count...1, 2, 3, 4...ready or not here we come!
I CANNOT believe Eden is almost a year old. What a doll!!
I have been wanting to post a picture of Eden's head but didn't think I was ready to show it just yet...I changed her bandages today so I thought I would take a picture. It is actually looking quite a bit less swollen then it did in the hospital. It is healing very nicely. It is going to take some time to get used to there being a lump there but I'm sure I won't even notice it eventually. As for Eden, she doesn't even care it's there. It's harder on me to see it then her I think! She's a tough girl!
So my little baby is becoming not so much a baby anymore...she has become pretty mobile this month!!! Yay for hitting developmental milestones!
Eden is a full out crawler as of 10/19. Hands and knees! We had a PT meeting and she confirmed that how I was working with Eden to teach her the proper way to crawl was perfect! Two weeks later Eden had it down like a pro. I don't think Eden is going to be hard to teach things to. She seemed to catch on very well! Once she got the hang of crawling she realized she was in control of her body and learned to sit herself up from her belly to her bottom (10/21).
Pulls herself up to toy box (10/30). That was a shocker the first time I caught her doing that!
Started saying Bear this month! Yay for new words!! Give kisses/hugs by request. Her hug consists of her leaning her head into yours! They are sweet hugs none the less!
Eden got her third tooth 11/1 (left top second tooth from front), and her fourth tooth 11/13/12 top left front tooth. She looks like a little beaver now with all four front teeth!
I really like this picture of Brian and his almost one year old!
I had to post this picture of Eden sitting on the floor. The cutest little toes and bum is cute too! She always sits like this and will often bounce up and down from being on her knees to her bottom. It's kind of like her own little dance. She especially does it when she is really excited about something!
As you know, we got home on Sunday. On our way home I talked to my parents who were watching our other three kids in CF. She told me she thought Austin probably had strep and for that reason we felt that we probably shouldn't have him in the same car with Eden. My parents gladly brought the kids back to New Hampton so we wouldn't have to do that. We have to be extra cautious with Eden and make sure to keep her away from any possible infection. Once home we made sure to keep Austin away from Eden. But we let the girls play with her keeping their distance a bit. On Monday night I was awakened by Brian telling me Adah just puked at the top of the stairs...A LOT. It was the biggest pile of puke I had ever seen and it was in her bed, hair, on the floor in her room, everywhere. So at about 11:30 at night she got a bath. I took a washable comforter to my room and set up a bed on the floor next to me. Literally 15 minutes after getting settled in Brian came in to tell me Keziah just puked. So he stayed out on the couch with Keziah set up on a comforter on the floor while I was with Adah and all night about every 15 minutes they puked. Adah stopped by about 1:30 and Kez stopped about 4 am. All day today they have done nothing but lay around but so far no more puking! Whatever Eden had was pretty nasty and took over the other two pretty quick!
Oh yeah, and we took Austin to the doctor and it was confirmed as strep!
We really didn't want Eden around the girls and she really needed to be able to play so for a while Eden and I stayed on the top floor and played up in her room, we had Kez and Adah down in the living room, and Austin downstairs in his room. But Eden could only do so much in her room and she was getting tired of it by the afternoon so during nap time I deep cleaned the living room so Eden could come down there and play. I set up the girls in my room with the TV on. Here they are looking so miserable...poor sweeties! Austin was allowed to move out to the basement living room and watch TV if he was feeling up to it.
Adah was really tired from her eventful night. She was playing a game on the iPad and just fell asleep. My kids never do this!
While we were busy taking care of our sweet baby Eden, many family members were taking excellent care of our other three kids. So, thanks so much to all of you who helped. Even if you weren't physically here helping...if you were praying for us all that the week would go smooth, THANKS! We appreciate all of you!
My Aunt Alena came and stayed Sunday through Tuesday. How many kids can say they know their great Aunt so well? My Aunt Alena is one of two aunts that we see regularly through the summer while we are up at the river so they were very familiar with her and love seeing her. I think they had their battles (mostly Keziah because she is very strong-willed) but they did well otherwise. Keziah had school on Monday (as well as Austin obviously) so Alena and Adah went to a coffee shop in our town where one of Alena's good friends owns it and they ate lunch. They had a good time just the two of them. Tuesday night Brian's mom took over. She was there until Wednesday evening. She took the girls to gymnastics from 4-5 and fed them supper. My mom got there sometime after supper and was in charge until we came home Sunday. Mom and the kids left after Austin and Keziah got out of school on Friday and stayed in CF until we came home Sunday. Thank-you everyone so so much for all your help. We don't know what we would do without you!
Here is a card that Alena helped the girls make for us. She said Keziah was very particular on some of the clothes pieces and even made her cut them a couple different times to make them look more proportional! I love how meticulous Keziah is!
We are so excited...we get to go home!! Eden's MRI on Friday showed that everything was looking very good and draining properly. Her puking was not being caused by a shunt malfunction so that is wonderful! She must have just picked up the flu from walking the halls on Thursday! I guess if you are going to get sick the hospital is the place to do it! Here she is as sweet as can be! I don't dare put a new sheet on her bed because even though she's done puking...it's pouring (literally) out the other end!
Such a sweet cuddler, even when she's feeling better!
Eden is so patiently laying there getting her IV out that has been hanging in her face all week! She was not happy to have it messed with but there's no doubt that it feels better without it!
It's really happening...we are going home! There's no turning back now! After having avoided going home yesterday during the Iowa Hawkeye's home game, we are finally going to get to go home today! Yay for home!!!
Eden started throwing up this morning :( Last night I noticed she didn't want to eat her solids very well. And through the night she was very whiny but wouldn't move a whole lot. I nursed her at midnight because I didn't know what else she would need and she ate really well. The night was pretty uneventful outside of a half hour. She even got the approval to be completely free of all meds (antibiotic and steroid) so we weren't awakened at 5:45 like we were supposed to be. She did however wake about 4 times between 3:45-4:15. I got the nurse to come in and give her some tylenol thinking that's what the problem was. I think the tylenol helped her rest until she woke at about 7:30. Soon after that I tried to nurse her but she wasn't having it. She started coughing and immediately puked. She has done this about 5-6 times now. We went down for her MRI about 9:30 to make sure everything is stable with her shunt. In the meantime a neurosurgeon (not our usual) prescribed some IV fluids and zofran (an antinausea med). Hopefully she is on her way to feeling better.
The neurosurgeon that came in also reprogrammed her shunt which is necessary anytime she has an MRI because of the magnets. It was very interesting. It was this little hand-held thing that she held up to her head at a certain spot on her shunt and turned a little knob a few times and voila...it was reprogrammed. On another note I am really glad she is free of antibiotics because it was giving her a severe diaper rash. I wonder if when the nurse asked the doctor for a prescription for her butt, he decdied it would be ok to take her off the meds. Her butt is already improving tremendously!
Here is my little peanut asleep. She feel asleep watching a show. Shortly after this she woke up to puke but then rolled over on her belly and ended up like the next picture. I hate watching her feel so awful but am so thankful that we are in the hospital where she can get good care and make sure it's just a virus opposed to something going on with her shunt.
SHE'S FREEEEE!!!! Free of wires, cords, laying flat and free to eat whatever she wants! So thankful right now. I scooped her up in my arms and squeezed her tight! She was a little leery when I picked her up out of the crib. Her body is super shaky from not getting as much to eat and I'm sure lack of sleep is at fault too. So the next step is getting her some protein.
Happy baby and happy mommy!!!
Chicken and Rice is what's for lunch today! Along with some plum berry with barley
and cheerios-we can't forget her favorite thing of all!! She would drop one on the floor and say, "uh-oh!" And if you don't pick it up immediately, she will stare at it and keep saying uh-oh until you do!
Dr. Menezes came in about 1:00 and said since it has been 48 hours we are free to get her up and moving around again. He said we will do an MRI tomorrow morning to determine if he is going to open the valve some more or wait and have us come back next week. He gave us a tentative day of going home on Saturday or maybe Sunday. He said that won't change no matter if he leaves the valve the way it is or opens it some more. The only difference that would make is when we come back again. He also gave us permission once again to feed the kid and made sure our nurse was aware too. His fellow is going to come back later and change the dressing on her wounds sometime today.
It is about noon on the third day (thursday) and we are still waiting to hear if Eden can be up and moving around. It is nearly impossible to keep her flat now that she is regaining energy to be up and mobile. We must have paged our surgeon 6 times last night and a couple more this morning and heard nothing. The nurses here are frustrated because if he truly wanted her flat he should have given her sedation to make sure she is staying flat. We have let her on all fours a couple times for a minute or so to give her a break and then flip her right back. I have been standing over her crib playing with her all day yesterday and now today. It's tiring but God is good...she is doing so well!
Our other issue is Dr. Menezes gave us permission to give her solids (to our faces yesterday morning) and then failed to put in an order for it, so none of the nurses knew about it and would allow it. I can't say it has been horrible but it's been hard. She is a normal baby and wants to eat lunch and supper just like the rest of us! When we got to our new floor yesterday it was shortly after seeing the doc and we just told the nurses on our new floor that he had told us it was ok to give solids so she just believed us and let us do it since Eden was hungry at that time. She was just finishing up her last couple bites and the nurse came in to say he hadn't put the order in yet so we weren't allowed to give her anymore. So at least we got lunch in her before that all happened!
We are passing the time by with a Baby Einstein movie (see the TV hanging from the ceiling directly above her bed?)! And we may have snuck her a few cheerios to enjoy with the show!
I love this picture of her completely focused on the movie. She loves the puppets especially!
One of the nurses came in and gave Eden a sponge bath. She was so cold the whole time but it was a good way to waste another half hour of laying flat! Plus, we got to put on a new set of clothes and a fresh sheet when we were all done!
I can't help but smile seeing her up on her hands and knees crawling around her crib and landing sitting on her butt. What momma wouldn't be proud, however, there's one little problem, she is still supposed to be flat ALL the time. I think things just got a lot more complicated!
She is so happy!! She must be feeling better!
These pictures are of Eden in her new room and bed. We are in a regular pediatric room now on a different floor! Like I said before, we are just one step closer to going home! The nurses are just as wonderful here but the room is actually made for two patients. Hopefully we don't get a roommate anytime soon.
Here's Eden enjoying a show to pass the time away!
11/4 We arrived in IC on Sunday evening to the Ronald McDonald House. What a blessing it is to have the privilege of staying there again.
11/5 We had a couple pre-op things to do today. Brian and I are secretly hoping something will come back causing the surgery to be canceled! While we understand the surgery is something that is necessary, I don't think any parent is ever excited to watch their baby go through pain. Putting it off isn't going to do us any good but it sure would be nice if say, her MRI showed so much improvement that the Dr. decided it wasn't necessary! We had the MRI at 9:30. Eden did WONDERFUL! She has never laid so content. She was even playing with the apparatus that goes around her head, just laying there as still as can be, NOT CRYING! Amazing really! After the MRI we met with one of the fellows who explained some things to us. We got her hooked up to do a urine sample and then went a floor up to get some blood drawn. We saw the lab order for several tests and thought it was going to be miserable trying to get that much blood. Instead, it was another blessing as she laid there with no tears and played with the child life specialist who had fun intriguing toys! They put an iv in her arm and we never once heard her cry or saw her flinch!
11/6 We arrived at the hospital at 6:30am, around 7:50am they marked her head and I carried her back to where they would give the anesthesia. I laid her on the warm bed. She looked up at all the lights and strange faces and was terrified. She didn't even make a noise but she was crying. She was so scared. I pulled in close to her and she calmed down. I was so thankful to be in there with her. They put the mask on her and in less than a minute she was out. We got notified at 9:45 that the incision was made. Brian and I weren't alone, his parents came to keep us company and support us. And of course, be there for Eden.
We were told at 11:00 that she was out of surgery and it went well. We are supposed to go have a consult with Dr. Menezes in about 15-20 minutes.
Dr. Menezes said surgery went well. He said she is going to need to stay flat for the first day. We get to see her in about a half hour in recovery. He ended up putting in an adult valve because he said that it is more precise on it's programming and it's really not that much bigger. He said there's less of a chance we would have to re-do it too. He said he did end up opening it a little bit which is why she needs to stay flat. He wants it to be stable before adding in the natural gravity of sitting up.
Recovery was rough. She woke up and noticed Brian and I but was very grumpy about being there. It escalated the more hungry she realized she was and the more she realized I was standing right next to her and not feeding her. She hasn't cried that hard for that long ever. She would take the bottle of pedialite but then throw it because she has never taken a bottle and was mad it wasn't what she wanted. We then tried some pumped milk in a bottle, still the same problem, then we tried a sippy cup because at home that's how I give it to her for lunch, but she was just being stubborn. We were on our way to the PICU when she finally decided she was hungry enough to drink some of the pedialite. She started to settle down but got upset again when it was gone. I then filled the bottle with BM and she drank it right down before falling asleep. She has a very raspy voice and a bark to her sleeping, but the nurses said it will get better. She had to have a breathing tube so her throat is probably a little sore. She woke up from a little sleep and was a totally different kid. She was playing and talking to us. She got hungry and downed 5.5 oz before falling fast asleep again! The rest of the evening was pretty uneventful. We had a couple visitors. Mike Brost came and surprised us and stayed for almost an hour talking with us and before leaving prayed with us. My sister Emily was in DesMoines for a conference and went home in a round-about-way, stopping here first. It was so great to see her! Eden was sleeping some of the time while she was here but Emily was able to see her awake and happy before she left.
The night went very well. Eden had tylenol around 6pm and didn't have it again until 5:00am. That is the only pain med she is on! Amazing, huh? We woke her at 11pm to do some bloodwork and feed her a bottle (they still have me pumping because they need to see how much she is taking in). She went right back to sleep and woke herself up shortly after 4am. She drank about 6oz., had an x-ray and some tylenol then went right back to sleep again. She is such a good baby!!
11/7 At 7:50 I got the ok to nurse her as long as I could get in bed with her and keep her flat still. She ate like a champ! YAY!!! Dr. Menezes came in to see how she was doing and walked anxiously in the door saying, "how's my baby?" He really is a sweet man! He took one look at her and said, "you don't need to be in the PICU anymore. Let's get you out of here and in a regular room!" So sometime today we are one step closer to home! He said she looks wonderful but unfortunately he does want her flat for today again. He said that we could put her at 30 degrees to feed her lunch and supper but then she has to go flat right away again. So far this hasn't been a problem, she is content on her back, praise the Lord! There are moments where we have thought she was going to lose it but we can usually distract her with a toy or something! God is so good and is definitely holding my baby in His arms while I can't. She is perfect because God made her perfect just for me! I will post more later! In the meantime, here are some pictures from Sunday to today...
We had little space in our RMH room for her to play but she still managed to crawl around a bit! Brian and I took turns getting pictures with the star! She is naked on the bed because we had to give her a bath and then wait an hour and rub her down with some sterilization clothes. They are sticky and take a few minutes to dry so she is just hanging out naked playing with some paper! I love the top picture of Brian and her. She has a finger on her nose and a finger on his! The one of her standing is at our pre-op apt. She decided she was big enough to go 'no-hands' so I had to quickly put my hand on her back for support!
Eden agrees that 6am is too early to be awake and in a car seat! We put her in a gown (5 times too big)! Mommy and Eden about to go back to anesthesia...she looks worried :(
And she's OUT :(
Hungry after a rough time in recovery, taking the pedialite.
Sleeping peacefully. Watching a sleeping baby never gets old!
So sweet :)
Aunt Emi stopped for a visit!
Sleeping again!
Holding her own bottle...I think she's starting to get the hang of this bottle thing!
She wouldn't leave her wires alone so we put a shirt on her. I love this onesie because the neck on it is bigger and I didn't feel like I was hurting her! Don't you love the hat? Someone in anesthesia decorated it with Hello Kitty and her name. It's supposed to keep her from touching her incision area but I think she hates it so much it draws more attention to that area!
Just about to go out...so sleepy after a good nursing!
