Cast pictures--finally :)

llama llama again!

Kiya loves to read. She will sometimes be content just flipping through her books by herself or she will insist that you read them to her. She has some very clear favorites and those change over time. It used to be Princess Baby and Good Night God and then her Dora books and well now it is all about Llama Llama.

There are a total of 4 Llama Llama books. We own two. The other is only in hardback and the holiday one is a pre-order only right now. So this means that we read these same two books multiple times per day and I am not talking about twice each. Try more like 4 or more times each book everyday. She can't say llama so she screams for mama. She calls me mommy and the books mama. Very cute really.

These books are a little longer and she actually pays attention to them. She will sit or stand for the whole book and usually each time we read it. She loves them.  We get a little tired of reading them but they are cute books and it is a guarantee we will have the others. I am hoping they pop up on her daycare book sale list. That is how I got the other two and they were only $3 a piece.

So until then we will read llama llama and enjoy all of the baby llama drama. :)

Walking?

So tomorrow we hit two weeks in cast and 1 week in her ankle supports and guess what....we have a sort of walker :) She would take independent steps before but usually only after much coaxing and really only to me or to Dave.

Now that is not the case. On more than a few occasions today did I spot Miss Kiya taking off walking all on her own. She even stopped a few times even and just stood there not holding on to anything. She would walk from her toy box to the coffee table to get her sippy cup. She walked from the window to the couch to try and get the remote control. She walked from the couch to her table to play with her puzzles. I could go on but that would be boring. In the past Kiya would crawl to get to these things but it appears she might be leaving the crawling behind.

I am not going to say she is a full time walker yet but we have a solid part time walker. The best part is she will walk with her shoes and supports and without :)
My baby girl is going to be running soon...pray for us.

Life with a frustrated, determined and loud toddler

Kiya is doing fantastic. In fact her physical therapist was just so impressed with her. She couldn't believe how well Kiya was walking, bending, etc with her cast on and her ankle supports. She doesn't think it will be all that long before Kiya takes up walking full time. Right now it is a part time activity but standing is much more comfortable and as she gets used to her ankle supports that will help too. She also commented on how great Kiya's hand/eye coordination are, her verbal skills and just how well she will imitate sounds, words etc. The two of them had fun yesterday.

That said there are times when Miss Kiya gets frustrated. And her frustration leads to screaming. Sigh. Bring on the terrible two's. If she tips over and is in a corner somewhere she has a hard time maneuvering herself to be able to get out. Also since she still crawls at times and wears a lot of leggings, she slips and falls a lot on the carpet and the linoleum floors. Both of these require a scream and usually mommy asking if she needs help. If she says yes I help her otherwise I encourage her to try again and do it herself.

She also really wants to try to climb the stairs again. This Mama is not ready for that one. She is top heavy and only been in her cast a little over a week. Maybe in a few weeks....maybe....or not. Sounds scary.

She is very determined to do things herself yet sometimes she just can't, hence the frustration. She has a great vocabulary so we are encouraging her to use her words and not scream and if she is to whiny/screamy/frustrated we take a break. A break includes her sitting in her chair with her blanket (also known as tee tee thanks to a girl her age at daycare) and calming down. She gets up when she is ready and is usually in a better mood after that.

Volume control is an issue in that she doesn't have one. She is set to LOUD all the time doesn't matter if we are inside a store, at home or outside at the park. Screams of "hi, bye bye, nigh nigh" are all common.
We also hear a lot of "Mommy, Daddy, r you?" (as in where are you). Or my favorite, "Mommy, now or Daddy, now." She also repeats everything and since Badger can be a tad naughty at times and is told no a lot, she has been yelling at him. Poor guy. So we are also hearing, "Doggie, no. Sit." Doggie is Badger, Bassy is Sebastian. She rarely yells at her Bassy. Though I was calling for Sebastian to come inside and she was behind me saying, "Bassy,  Bassy, r u?" We are working on not saying no to Badger but that is tough. He has issues but we are trying to praise him and teach Kiya "Good Doggie".

Yesterday we were at the grocery store and she was singing which she does all the time and when she finished "wheels on the bus" she screamed "yeah". I told her she was being loud and she repeated "loud, loud, loud" to the tune of "wheels on the bus". Sigh. And no there was no inside voice at all. She is just loud and loves to hear herself and wants to make sure everyone can hear her too. It always cracks me up when a former teacher at daycare says that she doesn't hear Kiya talk much. I was like, really, try spending 30 minutes with her in the car.

So life has returned and we are settled into our new normal. Kiya is just a remarkable kid and I am truly in awe of her. Nothing is going to stop her and I think that is a great quality. Next week she starts her transition to her new room at daycare. I am not super thrilled about it as we will have brand new teachers that she doesn't know and will now have to deal with her cast. I foresee this Mama Bear having to step out and set up some guidelines but we shall see. I am trying to be open minded about it but I know what they are going to want and it isn't what I want. For example, Kiya falls asleep on her own. She doesn't need to be rocked and while I complain about nap fail she does just fine if she chooses to skip one. Apparently these teachers want all the children to sleep. Kiya sometimes sleep 13+ hours a night and therefore doesn't necessarily need a nap. In fact even in her current room on her daily sheet there was a frowning face because she only napped for a little over an hour one day. Sigh....sorry she is a curious kid and just can't be bothered with sleep.

How is she doing?

GREAT!

Check Kiya's Kare Korner for more details :)

I love this kid. She is a super star!

The depths of motherhood

This post has been in my head for awhile...not sure I am really read to write it but I am going to take a stab at it.

Motherhood was not always my dream. When I was 18 I was pretty sure I didn't want to have kids. When that changed I wanted a boy for sure no girls. Like I could have a say in that. Then I met my husband and I knew for sure that some day I wanted to be a mom and it really didn't matter if it was boy or a girl. I just had this gut feeling.

My journey to motherhood was challenging and full of heartache at times. There were needles and tests and drugs and waiting and more waiting and lots and lots of tears and stress. Then we decided to adopt. And with that there came waiting, heartache, tears and finally one cold day in January a call forever changed my life. I saw my daughter's face that day and I knew deep down in my soul that we meant for each other. I knew she had gone through so much and that she was so so tiny and so vulnerable and that somewhere 7000 miles away a dear, loving woman made a very difficult choice deep seated in her love for that little girl. The little girl I call my daughter.

All along my journey to motherhood, I am not sure I really got what it meant to be a mother through and through. Sure there is the day to day meeting of basic needs but it is so much more than that. Motherhood runs deep through me to my very core. I wasn't really prepared for how intensely you can love, nurture and advocate for a child. I didn't get it. I get it now.

My sweet Kiya is truly a gift from God. She is a force of nature and I have learned in these recent months that there is nothing I wouldn't do for this little girl. Nothing. A dear friend said on Tuesday, cast day, that she forgot for a moment that Kiya was adopted. She saw pure love, connection and family that day. That really touched me. I don't think too much about it but to know that someone looking in at our family saw just that a family formed by pure love...well there are no words to describe how that makes me feel. It is what I always hoped and dreamed about but to know that it shows through to others unfamiliar with adoption tugged at my heart.

Motherhood has forever changed me in ways I never dreamed possible and while my path to motherhood was long and difficult I wouldn't change a thing. I can't envision it any other way. We truly were supposed to be mother and daughter. I can't thank dear Zinash enough...she did something I could never have done. Her love for our little girl is so amazing. The depths of motherhood ran deep through her as well. They had to. For her to willingly place her daughter in the hands of strangers. Wow. She is a pillar of strength and part of my heart will always belong to her.

Being a mom is the best and hardest job I have ever had. I love my sweet girl more than I ever thought possible. I will fight for her when she can't and I will stand by her always. I don't think I fully understood this until we had to face the reality of her scoliosis. It has made our bond run deeper. It had too. She was scared. I was scared. I had to tap into a reserve of strength I didn't know I had. Why? Because my daughter needed me. I wouldn't have found this strength without her. She is my motivation. My driving force. She is my daughter and it became all to real that the world better not stand in her way or mine.

Learning Curve

We are adjusting to our new normal. We all have a lot to learn. Just about everything is different now. The one constant is Kiya's super silly, sassy personality. She is back and full of attitude.

We gave her a sponge bath in the laundry room sink. That was a little interesting but went okay. It will get better. We haven't attempted hair washing yet but will this weekend.

Diapering is going okay. She isn't a big fan of it but is getting a little better with it. It just feels different and we have to tuck the diaper up under her cast in front and back.

The two biggest challenges we have had have been eating and sitting. When Kiya was sitting in her high chair with the tray on, she couldn't really see her food and she couldn't reach her sippy cup in the cup holder. It was a little better when we took the tray off and pushed her up to the table. We have now moved on to the booster seat right up to the table and that appears to be the best option. Her arm span is a little shorter now with the cast on so she can't reach as far.

Then there is sitting up. She really can't sit up all that well by herself. She needs to be leaning up against something. She has sat up without support but not for long and it appears to be uncomfortable for her.

So we still have some little kinks to work out but we are all moving forward and learning and adjusting. Kiya is a total rock star and has been amazing. Sure she is whiny, demanding and full of attitude but I am pretty sure that isn't all cast related as she is almost two and well has always been full of drama :)

I am pretty convinced that we have the most adaptable, accepting, loving, sweet and sassy little girl.

**Updates on Kiya's progress in Kiya's Kare Korner

Cast Day

So yesterday was the big day. It was overwhelming and long to say the least. We had to be there at 6am and we walked out the doors about noon.

I am not even really sure I can accurately put into words what yesterday was like. It just was. However, I can say that I really feel like we had the best first cast day ever. Why? Well so many reasons really. First, we got to share it with two amazing families that have been with us on this journey the last few months. Their sons were there for cast #5 and the hugs, words of support and encouragement meant the world to us. I have life long friends in these women. Their husbands and parents are pretty amazing too. And the kids, well I think we had the 3 cutest, bravest and most amazing kids in that hospital yesterday.

Where there tears? Oh yeah. I cried a good number of them.Where there screams? Oh yeah. Kiya post anesthesia screaming was really tough. Really really tough but once we were able to be with her it helped. Yes we could here her screaming from the waiting area. I am not sure I could have prepared myself for that. I was warned by my new friends and Nurse Gwen (who is a saint in my opinion) but wow that was the worst part of the day for sure.

We were with Kiya up until the rolled her back to surgery. We even got to gown up and watch cartoons in pre-op with her. They gave her some medicine to help ease separation. Kiya LOVED it and wanted to more. Instead of settling she was all over the place. The nurse bought out this crazy singing/dancing super annoying monkey and she finally sat and watched that and settled. They rolled her back just before 8:30am.

We went and had some breakfast and waited. We sat with one of the other families and just chatted while trying to pass the time. Finally, the doctor's showed up. We got to meet her new Doctor also and he is GREAT. They told us her pre-cast x-ray showed a curve of 50 + degrees (she was previously around 40) and that they were able to hold her curve at 15 degrees in cast. I think I teared up and would have fainted had I not been leaning on a desk. I was never expecting to hear such a low in cast number. That doesn't mean when we take the cast off in a few months that her curve will be 15 it just means they were able to manipulate her spine and hold her at 15 for the next few months. I so wish I would hear 15 for her next x-ray but that is unlikely. We were assured that this was fabulous news for a first cast so we went with that.

Next up was taping, trimming and a little more trimming. The cast saw was not Kiya's favorite nor was Nurse Gwen and her tape. Did I mention that Nurse Gwen is a saint. She just loved on sweet Kiya and she could see that she was a spunky, spirited kid. She wished us luck with her :) She was just the best and didn't even mind when Kiya flung yogurt all over all of us really. She just laughed and said at least she didn't puke on me :) Robert had to trim a few places on the cast and really he is a gentle soul with all the kids as well.

So here we were with Kiya in her freshly taped and trimmed purple cast and kind of like now what. Our new normal was starting to set in. We had to change her diaper and that was challenge but some kind words from a sweet grandma helped. Now I feel like I could do it in my sleep. We had to adjust. We all did.

Kiya really did great. Much better than I had anticipated. I was preparing myself for the worst. All the nurses, techs, doctors, parents, etc kept commenting that Kiya really did do fabulous for it being her first cast. I was prepared for a long 3 hour drive with a grumpy toddler but I got a quiet peaceful ride. She asked for teddy grahams, pretzels and her dolly and then she slept. So sweet. She spent the afternoon on the couch where she watched her favorite shows. I fed her some yogurt. She did ask for a hot dog so of course she got one. She did manage to eat some of that by herself in the high chair. We are still working on the feeding situation as she can't see her food as well.

She can't really sit up by herself and as of last night couldn't stand up, roll over, crawl or really do much of anything. She did walk a few steps holding our hands but not much. I don't blame her really. She was in full traction and pulled every which way possible to get that 50 down to 15. She was sore and top heavy.

She went to bed at 7 after some Tylenol. Woke at 9:30ish and we gave her some Ibuprofen. She slept until 1am. I changed her diaper and gave her some tylenol and she slept the rest of the night.

Kiya is a truly amazing kid. She surprised us yesterday again with her resilience. I don't think I give her enough credit. I have a lot to learn from that little one. I am proud to be her mother. And if I ever doubted (which I don't) that we truly attached and bonded as a family, I got complete confirmation in that yes in fact we are. She needs us. She calls for us. She settled down for us. And we need her to keep us grounded and to keep on trucking. Nothing is going to stop Miss Kiya and I love that about my daughter.

***Update in Kiya's Korner also and will post updates about day to day there as well

Infantile Scoliosis

So forgive me today but I am going to stand up on my soapbox and use this blog post today to better educate the people in my life and those that may stop by. Why? Well, first off I want family and friends to understand what exactly is happening with Kiya and maybe answer some of their questions or reassure them a little and second maybe just maybe someone will read this and pass along the info to someone else who might share it with someone else, etc. And frankly, I am tired of hearing stories about pediatricians that know NOTHING about infantile scoliosis and the seriousness of it. It has happened to us once and I have heard way to many other stories.

Here is a place with some basic info that answers a lot of questions:

http://www.scoliosis.org/resources/medicalupdates/earlyonset.php

Here is the place I first went to when researching on the internet.

http://www.infantilescoliosis.org/

Because of this website I found a Y.ahoo group for parents with kids with infantile scoliosis. It is because of this group that I met my Chicago sisters that have been beyond welcoming and amazing and I am so fortunate that 2 of them will be at Shriner's with us tomorrow for their children's casts. If you have a moment watch the videos. Kiya will be able to do everything she is already doing and more. This cast will force her to do things a little differently but she can still play, walk, run, jump, etc.

Here are some other good articles.

http://www.medicalnewstoday.com/articles/165856.php

http://nyp.org/enews/cast-correction-iis.html

Thanks to a dear friend that I am so blessed to meet, Catie, we found our way to Shriner's Chicago. I signed up for the Y.ahoo group and posted our story. Within a few hours if that, Catie personally sent me an email and shared TONS of info with me and got me connected with the other Chicago Sisters as they call themselves. I get to meet Catie and Chrissy tomorrow. I have spent a lot of time on the phone with Cara and Sarah has been great to chat with on Facebook and then Amy and Catie send me videos. I am sometimes amazed by the powers of the internet and am so grateful to these amazing women for reaching out to me and showing me the ropes. We all speak the same language and that is a huge comfort.

It is because of these women and others out there that we didn't opt for the wait and see approach. If we had Kiya would not be having this cast done tomorrow but her curve likely would have gotten worse as every expert that has seen her doesn't think it will resolve on its own. We would have sat and waited until the end of October for more x-rays and then maybe a brace. A brace is in our future but braces only hold curves they can't correct them. These casts could in turn with follow up bracing cure her of scoliosis and prevent her from having VERY dangerous and risky spine surgery. We can't say 100% that surgery isn't in her future right now but if we proceeded with the wait and see approach surgery would have been a guarantee no doubt about it.

So we deal with a series of plaster casts that are on 8-12 weeks at a time with a one week break in between for as many as two years (but very likely less). Will it be challenging--yes. Is it doable...yes. Is it necessary...yes.

Stepping off the soapbox

Melkam Addis Amet!

Happy Ethiopian New Year! September 11th marks the beginning of the year 2003 in Ethiopia. Kiya was born in year 2000 in Ethiopia which was the year 2008 here in the US.

This date also marks the anniversary of when Kiya became a US citizen. The date on her COC is September 11th. Ironic that she lost her Ethiopian citizenship on Ethiopian New Year. Sigh.

We as per family tradition of 1 year will go out to eat at our local Ethiopian restaurant and have a family picture taken to mark the occasion. We will also share pictures of Ethiopia with Kiya and light our family candle and remember Mama Zinash.

September 11 has so many meanings in my life. It for the last 9 years brought a flood of emotion as I remember the horrific events of that date and the loss I felt when a student of mine was a confirmed passenger on Flight 93.

So it is a little weird to wrangle with the emotions behind 9/11 and what that means here in the US and the joy that is 9/11 in Ethiopia. I am doing best to be true to both.  That said I will continue to pray for all the families dealing with the losses they experienced on 9/11 here in the US and I will pray for Ethiopia that this new year brings much good to the country.

Big News!

WE GOT A CAST DATE FOR KIYA!!! There was a cancellation for Tuesday September 14th. Yup, that is 4 days from now. I can hardly believe it. I booked a hotel room. Two of my Chicago Sisters will be at Shriner's that day also so I am so excited I get to meet them.

I am slightly freaking out a little. 4 days of baths left. 4 days of squishy hugs left. 4 days until I have a ticked off toddler. I know we are doing the right thing but it doesn't make it any easier.

Trying to find some patience....

So I know bad blogger again but really life isn't all that interesting right now.

I am not a patient person. I am better than I used to be but still not patient. We are waiting on Kiya's cast date. I know it has only been a little over a week since we were there but still. I want a date. I want to stop the what if's running through my head and just get started already.

I did check in with the nurse yesterday. Since Kiya's Dr. is leaving and he does most of the casting, everyone is trying to get in to see him before he leaves. Well, with the help of a friend talking me through it, I called the nurse to ask if we could just have Kiya's cast done by the doctor she will be seeing in the future. She agreed that it made sense. Right now we are waiting on Dr. S's schedule and that is pretty full. We are hoping to get in to see Dr. H maybe faster. Dr. H would be the one to do Kiya's follow up check up after 1 month in cast and then her future castings. We haven't met this Dr. but have heard amazing things about him so here's hoping.

On the adoption front, we got word that we will likely wait at least 24 months for a referral. Sigh...we knew that was coming but to see it officially written was a little tougher to take. The only thing that could slightly speed it up is whether or not we are more open to certain conditions than others and the fact that we would like to have a son. Either way we will wait it out. It gives us plenty of time to get Kiya out of diapers and if we are lucky out of casts too. It will all work out. I really don't even think about the wait for our son that much but when I got that email it all came rushing to the forefront. So when people ask me when we will have a son my stock answer right now is sometime in the year 2012 hopefully.

We are also waiting for the call that says Kiya's ankle braces are ready. I am hoping that one comes in early next week.

So kind of a boring post. To end on a happier note, Miss Kiya is a superstar. She loves all things related to her doll. She straps her in the high chair and pretends to feed her. She loves her new art easel and crayons. And since thanks to a dear friend it looks like a Dora toy store in my living room, she is loving all of that stuff too. She is saying more and more words every day and word combinations. She is unfortunately and fortunately waking up in the middle of the night if her diaper is wet. Good sign for future potty training bad sign for sleeping. She is developing this impy side to her where she is deliberately doing something she knows she shouldn't and then laughing. It is hard not to laugh with her as she is just too cute. So I have no doubt that this wait for our son will fly by as Kiya will definitely keep us on on toes and running around.

Weekend fun

We had a great weekend with some great friends and their kids. I am tired but it was fun. It has been way too long since I stayed up late just chatting with friends.

Kiya has a new BFF. Her name is Molly and she is 6. Kiya just LOVED her. Her whole face would light up when Molly entered the room. She let Molly walk her around, pick her up and read her a story. To be honest it was great having a 6 year old around to keep Kiya entertained. I could actually have an adult conversation and trust that Kiya was going to get into anything.

We spent the weekend on Lake Wisconsin. I wish the weather would have been better but it was still nice. Dave took everyone out on the boat which was nice. Kiya and I stayed back. She had a very angry reaction to putting on a life jacket so we snuggled on the couch, had a snack and watched Dora on the laptop. I blame being almost 2 and those awful swim lessons that tortured kids with floating in the pool in a life jacket but whatever. I did like the snuggles though.

We also went to the Taste of Madison event. It is on the square and has restaurants of all types of cuisine. It is so fun. We try and go every year. It was at this event a few years ago that I first had Ethiopian food. It was love at first taste....except for the injera....still working on that one. This year I had Ethiopian food, Indian food, Chinese food and some of Kiya's fried fish. Kiya are 2 different types of fried fish (halibut and cod) and more pretzels than I think are allowed by law but the pretzels kept her from screaming so we went with it.

Highlight of the weekend was hanging out with our friends and their kids. Low light...Kiya didn't nap for 3 days in a row. She unfortunately did pretty okay with no nap. I am really hoping this isn't a permanent thing and more of I don't want to be away from the action aka Molly thing. Fingers crossed she naps today. This mama is so not ready for Kiya to give up her nap. I really don't think she is either but she has been sleeping 13 or more hours a night...sigh...

If she gives up her nap when do I get to nap and/or watch trashy reality TV???

Sigh of relief

First, I LOVE Shriner's Hospital! Everyone was so nice and so great with Kiya. And of course they all just loved how cute and spunky she was. Kiya has been known to not like male doctors but she did great today. She walked with the resident, sang for the nurse and the social worker and even said hi and bye to her doctor who is an older man. She had one little melt down but recovered. The only downfall is that there was a lot of waiting hence bored toddler and at one point she started to fall asleep. Too cute!

That said, we are breathing a big sigh of relief. The doctor looked at her x-ray and MRI films and agreed that there were no abnormalities. He also felt like her curve was around 40 degrees which in essence matches what the doctor here told us. We got asked a TON of questions about her development and if she had any other medical issues. We gladly responded that she is a healthy kid and after recent evaluation from Birth to 3 that she is meeting or exceeding all developmental milestones with the exception of walking. I think we must have said this like a million times. We told the nurse, the resident twice, the doctor, the social worker, etc.

The doctor was confident that if she had no other neurological issues that the Mehta casting would do wonders to fix her curve. He asked us if Kiya had been to a neurologist and we said no that there was no reason to as of yet. So he asked us again about her development and we repeated that she is right on track with no other concerns and he said great this casting should do wonders for her.

We really liked Dr. S. He will be leaving Shriner's Hospital sadly, but we know we will be in good hands after he leaves. His nurse, Linda, is beyond amazing and I am so grateful she is part of Kiya's treatment team.

So I am breathing a HUGE sigh of relief tonight. Why? Well my fears were going into this appointment were that the doctor would see something that was missed or that he would tell us that Kiya would need surgery. Surgery isn't permanently out of the picture but it is nowhere near the table right now which is reassuring.

We are ready to get started. We are hoping for a date in September still but the calendar is getting full. We are crossing our fingers and saying our prayers that September it is. We are ready to start our journey to being straight. No more curvy back for Kiya. That is the goal. We know the road may be bumpy especially at first but we have to start somewhere.

**Additional numbers in Kiya's Kare Korner.