Updates galore

So my blogging time is limited so this post is some updates as to what is going on with Kiya, scoliosis and our pending adoption.

Kiya

She is FANTASTIC. We enjoyed our week of squishy hugs and bubble baths. She is officially in pull ups during the day and diapers only at night. She is doing just awesome in the potty training department. She still sometimes wets in her pull ups and we are getting there with the whole poop thing. She did go poop on the potty twice yesterday but had started to poop in her pants. She told us though that she wanted to go to the potty so off we went and sure enough she finished pooping on the potty. She gets one star for pee and 2 for poop and when her reward board is full which it is she gets a prize. Her first prize is a playdough filled back pack with accessories that we are going to play with today.

Kiya still loves to sing and dance. She talks all the time. She has a tendency to be very bossy so we are working on using nice words and respect. Telling mommy to walk away tends to be a favorite. Or she will yell at the dogs to do something and poor Sebastian is pretty deaf so we have to remind her that his ears are broken.

She is now sporting a super cool blue cast. She for a week said she wanted a pink cast but they showed her the colors and she immediately said blue. We asked her if she was sure and she said "Yes mommy, blue cast." She bounced back VERY quickly. We thought we would get one night of her staying in bed all night and sure enough she got up once. The saddest part was the morning after when she said "bubble baths all gone" followed by "cut cast. cut cast off mommy". Broke my heart that she is old enough to understand all of that. We just told her that cast had to stay on and she seemed to get over it.

Scoliosis

Tuesday was surgery day. She did great. The doctor gave us a chart of her progress that showed her numbers out of cast and in cast. Her out of cast numbers started at 40 which was her initial measurement back in June of last year. She was 52 right before her first cast. She went up to about 64 after the 2 month break at the end of last year. Tuesday she was about 61/62 so we got a small amount of correction. Her cast numbers have always been awesome. She was held at about 15 in first cast, 16/17 in second cast and just under 15 in her 3rd cast. She is super flexible which is good. In talking with the doctor, he isn't worried yet. He said it often takes 2-3 casts for kids to show real progress and we really need to look at this as cast number 2 since she had such a long break after cast 1. It makes sense so we are sticking with it. We are so very grateful to have Shriner's hospital and Dr. H. to treat Kiya.

We also discovered that Kiya weighs 29lbs and is just under 36 inches tall. Yup my little string bean :)

Adoption

We are still waiting on our Adam Walsh clearance from California. All other paperwork is in and has been reviewed. Just one piece of paper holding us back from being officially waiting. Sigh.....

It will happen soon I hope but for now we just wait.

So I think that is a long enough post for today. Need to focus on our post placement report that is due next month.

Perfect?

I got into a conversation today with an employee at my favorite local coffee shop. She knows a little bit about what is going on with Kiya and asked how she was doing. I told her she was great of course and she asked me, "don't you wish you could make it all go away, poor thing?"

I didn't really know what to say. I actually think my life is perfect just the way it is. I have a wonderful husband, two adorable dogs, a great family, amazing friends and this perfect little girl and hopefully someday in the future an equally perfect little man. Sure my husband works too much, my dogs are kind of nutty, Kiya has a curvy back and the wait for my son is getting really really long but I wouldn't change a thing.

I can't imagine my life any different. Sure there have been some curve balls thrown at me but I have always been a firm believer that everything happens for a reason. I may not always understand the reasons but if it is meant to be it is meant to be. When I tell someone that they look at me like I am crazy, why wouldn't I want to change the things that aren't perfect in their eyes?  I guess if I could wave a magic wand and make Kiya's scoliosis go away that would be great but that isn't reality. The reality is she has scoliosis and because of that we have met some amazing kids and families that are really like our extended family. So does this casting stink? Sure but it is doable. Kiya is thriving and we know we aren't alone.

We had a follow up appointment yesterday at Shriner's and were fortunate enough to meet 3 more amazing kids and their moms and dads. It was such a blessing to meet them. They have been such big supporters of Kiya and have helped us through our journey. We saw the doctor and all was well with the cast. No sores, skin breakdown, etc. We went and visited with Nurse Gwen and cast tech Robert and they were so thrilled to hear how great Kiya was doing.

And I thought, you know what? Kiya really is great. She is lively, sassy, bossy and well all the things almost 2 year olds are supposed to be. She is way too smart sometimes and she is loud and she is silly. Since her cast, she has become so much more independent. Her balance has improved. She can stand up without holding on to anything. She can stop and pause while she is walking. Heck she is walking. She walks way more than she crawls. In fact the other day I had to stop and think if I saw her crawl. Sure she has good days and bad but she is truly incredible. Why would I want to change that? Watching her, I have learned so much. Sure life has thrown me some curve balls but it has thrown big ol' boulders at Kiya and every time she bounces back with strength, attitude and laughter. It is a remarkable trait and one I know will serve her well in life.

So to life I say, bring it on. I may not like what you bring, but I know it is supposed to happen and I know that it can be managed. Heck I sure don't like scoliosis but I love my extended scoliosis family and I would never have met these amazing kids and parents. So keep on throwing those curve balls, we are getting pretty good at hitting them out of the park.  And with each curve ball comes another amazing revelation or gift.

++Brief update in Kiya's Kare Korner

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.

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

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.

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.

Tomorrow 10am

We will be at our very first appointment at Shriner's Hospital in Chicago. I am a nervous wreck. I am excited and scared all at the same time. I am confident all will go well but apprehensive about what the numbers will tell us, what the doctor will say.

That said I have a network of people who want live from Chicago updates. These women though I have never met them are beyond amazing. I talked with one of them twice last week on the phone and it was so nice to talk to someone who has been there done that and is so down to earth. I messaged the others on Facebook and they all came back with reassuring words and virtual hugs. It is because of these women that I have faith in the process.

We are jumping into the world of unknowns and that is a little scary. I am not one for unknowns but such is the reality in this case. I am crossing my fingers and saying lots of prayers that maybe just maybe we can get Kiya in her first cast before the end of September. I don't even know if that will be possible but the sooner the better.

While this process will be trying at first and adjustments will need to be made. I know we can get through it and hopefully some day (sooner rather than later) look back and remember the strength we had and the special week out of cast play times, etc.

It starts with our visit tomorrow. I am planning on being totally overwhelmed so I am grateful that my husband is along for the ride. He is not the worrying type. I am. So having a second set of eyes and ears will be helpful for sure.

And rest assured my Chicago Sisters, cell phone will be charged and text messages will be sent. You are truly amazing women and moms and I am so grateful that our lives have crossed paths.

Feeling hopeful

I know that I have been a terrible blogger lately. Honestly, I haven't been in the best of moods. Life has been taking its toll on me physically and emotionally. I have been in a bad mood. Life stinks sometimes. It plain isn't fair. But I saw a light yesterday afternoon, a much needed one that helped me shift my perspective a little.

Kiya had her first appointment with her Birth to 3 therapist yesterday afternoon.  I was really not looking forward to it. Kiya had been off and on whiny all day and really we have been there done that before with not much success. Boy was I wrong.

I LOVE our therapist. She let Kiya come to her and took it slow. She wasn't over bearing and while the hour we were together consisted of zero physical therapy activities it was the best hour. She played cars with Kiya and they laughed together. We all sang Ring Around the Rosie and If your Happy and you know it. It was amazing.

So why so great if we did zero therapy??? Well, because I am actually feeling hopeful. This hasn't happened in awhile. Our therapist was encouraged by all the things Kiya was doing. She felt Kiya was doing all the things that she should be physically and that her biggest problem was her ankles. She rolls in on her ankles while standing up. More so on the right than the left but it is obvious. This has been on the radar before but we had no clear solutions. That changed yesterday.

She emailed me last night the name of the braces she recommends, the name of the company here in town that makes them and a form for our doctor to sign so we can get these custom made braces. I dropped the form off at Kiya's pediatrician's office for her signature and then called the company that makes the braces to see what we needed to send them to get an appointment. The woman asked for all of our info, said bring the signed form in and then promptly scheduled us for an appointment for next week. I was floored. I am so excited to get these braces and see the progress.

Our therapist also suggested getting Kiya an easel or whiteboard that would force her to stand up more vertically with her hands up versus standing at a table with hand down.  She also thought it would be a good idea for Kiya to have a big wheel type tricycle, something with pedals. This will help her get used to alternating the use of each leg. She currently if we don't force her will climb up the stairs pushing up only on her right leg. She can push up just fine with her left leg she just doesn't.

I feel like for the first time in a long time we have a plan. A real legitimate plan to help Kiya catch up and eventually soar. We have this amazing therapist. We have Shriner's hospital and we have some new friends that have helped make this journey a little more tolerable.

I am ready to jump in and get started. I hate that all of this is happening but it is. Kiya is going to have a lot of changing thrown at her in the next few weeks and she is going to need me to be strong for her as she adjusts. I worry she will be mad at first. I take that back. I know she is going to be mad for awhile. I am not worried about the ankle braces as much as they are flexible and have velcro and she loves having her shoes and socks on. It is the cast that worries me. I know she will bounce back but she is going to be mad. She will have to learn to do some things differently but I know she will do it. The first cast will be the hardest on all of us but together we will get through it.

I think I may be ready to make lemonade with all the lemons life has thrown our way lately. I know this is going to be a bumpy ride for all of us and there will be good days and bad but I am hopeful. We finally have a path to follow that will hopefully lead to nothing but great things for Kiya. I dream about seeing her run around outside. I look forward to the appointment that tells us this is her last cast and she will be fitted for a brace. I look forward to Kiya truly achieving her potential and being a kid in all ways. She is such an amazing little girl and I hate that a curvy spine and some funky ankles are holding her back.  I am grateful for Kiya's energy, intellect, sweetness, creativity and that sweet little voice of hers.

Watch out world Kiya's is coming better than ever and she is a force to be reckoned with :)

Meant to be?

There has been a discussion well lots of them really that are pretty heavy and sometimes hard to read and sometimes even really judgemental. What about, well adoption of course and more specifically, adopting from Ethiopia.

So, was I meant to be Kiya's mother? I think that is a tough question but I strongly feel that yes I was meant to be Kiya's mother if her Ethiopian mother couldn't take care of her. A child is naturally meant to be with their biological parents however the world isn't always wrapped up in a nice little box. Sometimes, reality steps in and gets in the way as is the case with our adoption of Kiya. For circumstances beyond poverty, Kiya's Mama Zinash chose to place her for adoption. As such we were matched with her. So yes we were meant to be Kiya's and she was meant to be ours.

Digging a little further, someone asked me if we had known about Kiya's scoliosis at the time of referral would we still have adopted her? I can't even think about that. Because the reality is we didn't know about it and because we didn't know about it she was matched with us. If it was known, Kiya would not be a member of this family. She would be someone elses and that is just something I frankly cannot stomach.

Kiya fits here curvy back and all. I do think there was a greater force that connected us together. Sadly, yes Kiya had to leave a mother, a country, a home, a culture behind and that is something we will never forget. That said, adoption turned our world upside down in the most beautiful way and I am grateful for that.

Sure there have been some unexpected things thrown our way but Kiya is Kiya. She is sweet and sassy, loud and funny, opinionated and stubborn and yes she has a curve in her spine. It is who she is. That said we are not heros, or saviors or rescuers. We are merely a couple that wanted to have a family. So we sought out adoption. We are not bad people for doing so. Our adoption was the right thing for our family. It would make more sense if I just spilled Kiya's story but I can't and I won't. Just trust me. Adoption was the right thing for her and even more so now.

Her scoliosis may have gone forever undiagnosed and even if it was diagnosed it for sure wouldn't have been treated. Not treating progressive infantile scoliosis can be fatal. Her rib cage is shifting and thus in time could put pressure on her internal organs protected by that rib cage. That is a scary thought.

I have always thought positively about my adoption and now with a medical condition I am grateful that she is here with us and we are seeking the best treatment for her. That said, I don't deny there are issues in Ethiopia. There are some BIG issues in adoption in Ethiopia. These scare me. I worry we will not be adding a son to our family from Ethiopia because of all of these BIG issues and BAD agencies doing truly unethical things. I can't ignore the issues, but I can't ignore the place I fell in love with . The place where my daughter was born. I dream of my children sharing a cultural connection, is that wrong? To some yes, yes it is. But for my family it isn't wrong.

Brief update

Kiya got accepted into Shriner's Hospital today! Our first appointment is September 1st. We are relieved and scared and nervous and excited to start this process.

We are entering a world of unknowns but we are strong and we can do it. Kiya is a trooper and a fighter and I know she will do great.

Ok--so more updates to come once we get started and I will post those in Kiya's Kare Korner with a brief note in a regular post letting you all know there is an update.

Decisions, decisions.....

So I have been back on the Internet researching A LOT about scoliosis. I know I know I have preached that it can be scary but I need info.

We reached out to a family member who is an Ortho doctor and he helped answer a lot of our questions. And I reached out to a friend who is working with a specialist at Shriner's hospital.

In my gut, I am thinking we need a second opinion. One that may take us out of state. We have received info on Gillete Children's Hospital in St. Paul and Shriner's hospital in Chicago. Both have excellent Pediatric Orthopedic services. Specifically, Shriner's hospital does a particular type of body casting that has shown to be very effective. It is called Mehta casting. I don't even know if Kiya would be a candidate for this type of cast but I feel strongly that we need to find out.

I called our doctor's office to ask questions. The nurse answered some and will ask the doctor the rest. She told me the brace they would consider and it isn't horrible but would be one that Kiya would need to wear all day for possible as many as 10 years. Yeah doesn't sound fun and it may not work. It may stop the progression of her curve but wouldn't "fix" it per say. After she stops growing and is no longer a candidate for a brace, her curve could stay the same or it could get worse. If it gets worse she could be looking at surgery.

So while I freaked out when I heard about body casting, I am now encouraged that if Kiya is a candidate for this type of cast that maybe this is the way we need to go. She would have to get multiple casts as she grew but may only be in and out of a cast for up to a year, maybe a little longer and then maybe on to a brace but maybe not. This method has been shown to reduce much more severe curves than Kiya's.

A decade in a brace really doesn't sound like fun. Of course we will do that if we have to but if there is a better option that could significantly reduce the curve and her likelihood of future surgery than out of state or not we need to investigate it.

So this is where we are for now...more research in my future.

Birth to 3, Ortho update and frustrated

Kiya had her Birth to 3 evaluation on Tuesday. It was over nap time but she did great. She was quieter than normal but she did show off a little too. She followed simple directions, like go get your baby or can you bring me the ball, etc. She completed a shape puzzle, she sang the ABC song, kicked a ball, rolled a ball, she pointed to pictures in books, etc. She even used her push walker toy when asked and dumped out the contents of a small bottle and put them all back in.

The Early Ed Teacher was impressed with Kiya's problem solving skills. The physical therapist thought Kiya was making nice progress. She commented on her rolling in on her ankle and gave us some suggestions. She also noted that since Kiya has only been crawling for a few months, she may not be ready to walk just yet. She was excited that Kiya will walk a few steps independently between her chair and another person or between two people.

So now we wait for the report and see if she qualifies for services.

Ortho update and frustration are tied together. We had Kiya's ortho appointment yesterday and if the doctor was in the room for more than 5 minutes that would shock me. He called her Anna and was VERY brief. He said he was pessimistic that her curve would get better. He mentioned body casting and back braces and asked what we thought. I immediately asked what body casting would entail and got no answer. The doctor responded with well we can wait 3 or 4 months, repeat x-rays and make a decision then.

I expressed my concern that Kiya is making progress on walking and catching up to her peers and asked how either of these treatments would affect her mobility etc. Again no response. We got the wait and see, a handshake and he left. That was it. Nothing else. I was really frustrated. I had more questions than answers at that point.

Why is it that specialists have to be pompous jerks? Seriously, this is the second specialist we have seen that has ZERO bedside manner. No wonder Kiya wound up screaming at him.

I do believe we were the doctor's last appointment after a VERY long day and with Kiya screaming it was probably just enough to make him want to run fast out of that room.

We did discuss Kiya's right foot also. He wasn't concerned. Yes she rolls in on her ankles but he doesn't think it is that bad. The physical therapist disagrees and recommends an ankle brace or having Kiya wear her walking shoes in the house. So we are going with that. She has been wearing her shoes more in the house as she is less likely to roll in on her ankles with the extra support.

Once we got home, I did some research online about types of braces, etc. I know typically not a good idea but in this case it made me feel better. The braces aren't nearly as scary as they sound and some even are designed to only be worn at night. Most modern braces will allow her to have full range of motion and just be a kid. This was reassuring. There is one scary looking old school brace that I want nothing to do with but if that is what is best we will cross that bridge when we get there. I am seriously hoping her type of curve will work with one of the night time braces but we shall see.

Sigh. Really that is all I can say at this point. Sigh.

MRI update

Today was MRI day. We got up early and headed out of the house at 7:30am to get to the hospital on time.

We were admitted and escorted up to the Pediatric ICU. Kiya was at this point a little quiet and still a little tired since we had to wake her up. After about 30 minutes of waiting, Kiya was Kiya. She was playing peek a boo with her blanket and being silly. Then they put the pulse ox monitor on her big toe....yeah she wasn't a fan and kept trying to pull it off. She got over it and went back to being silly.

We had a great nurse and a great doctor. Kiya wasn't afraid of either of them. She was so brave. She was a real charmer. She had the whole PICU coming in to see her and say hi and catch a glimpse of that smile.

The worst part hands down was the IV. We left the room but they wrapped her up like a burrito and put the IV in her foot. She hated being held down and boy did she let everyone know it. She was a trooper and recovered fairly quickly. We came back in the room to cheer her up.

So now we had to wait for the actual MRI. We were told there was a delay as they were waiting on another patient. They gave us a wagon so we could pull Kiya around the hallways as she couldn't stand up and walk with the IV in her foot. We stopped in the playroom but didn't last long as she wanted to stand up. We took more laps around the Peds wing than I can remember waiting for the go ahead.

We got the go ahead a little after 10am. The nurse took Kiya and laid her down on the gurney and Kiya got upset so the nurse carried her and the doctor pushed the gurney. They were so good with her. She calmed down right away and they even let her keep her blanket and bunny with her all the way up until it was time for the scan and even then the nurse set her bunny at the end of the bed so it was watching her. Too sweet.

We were initially told that it was going to be like 2 hours so Dave and I headed to the cafeteria to get some food and some coffee. After a little over an hour, while finishing up our snack, the PICU doctor found us and told us that they were all done. We quick hurried out of there and back up stairs so we could be with her when she woke up.

She was still pretty out of it when we got up there but within 2o minutes or so she was sitting on my lap. Then a few minutes later she was back in the wagon ready for some juice and crackers. Boy did she like that apple juice....a little too much after the diaper I had to change a couple hours later :( The whole time she was eating her snack she was again charming the whole staff. Her nurse was just so impressed with Kiya and how smart and silly and brave she was. She even commented that we should keep raising kids cause we are obviously doing it well :)

Overall, Kiya did great and we are so proud of her. We are still waiting for results but the nurse told us that the radiologist who did the scan saw just a curvy spine and nothing else. Now this isn't official but it is preliminary good news. The nurse also told me I should call and check about results on Friday if I haven't heard anything. I sure hope we get some good news before going away this weekend but I was originally told a week so we shall see.

Thanks to all our online friends out there for the prayers, good vibes and private messages. It helped keep me sane for sure. You all are amazing and I am so looking forward to meeting some of you this weekend.