Big change of plans

Today was a very LONG day. I had a job interview that seemed to go really well. Then we had Kiya's 2 yr check up in which we were planning for a routine visit and 3 vaccinations.

Yeah things didn't go as planned. Let's start with the good news.

Kiya is hitting all developmental milestones and as expected a little behind in gross motor. She is nearly perfect in all ways. She weighed in at 29.5 lbs with her cast on so about 26.5 lbs. She is 35 inches tall. She is in the 83rd percentile for height.

As we were discussing just how resilient Kiya is and such a trooper, I mentioned that her cast was starting to stink. I noticed the smell just a couple of days ago. Well, Kiya was sitting on my lap and I was rubbing her neck and looked down her cast.

I look down her cast a lot. I rub a baby wipe where I can to get whatever grime I can off. We are always checking for sores etc.  Well, we majorly missed this one. Kiya has a pussy infected quarter size keloid right smack dab in the middle of her back. We found the smell.

I made a panicky phone call to Shriners hospital to talk with our nurse. She said get Kiya out of that cast ASAP as in now. So we started untaping, unpadding and scrambling trying to figure out what we were going to do. We were finally able to convince the ortho department to cut off her cast with the saw. Yeah not fun. Really not fun. Lots of screaming but really she did great.

We then peel off her cast shirt and wow. Seriously GROSS. Poor kid. The plus side is keloids don't hurt, it is a scar that spreads beyond the original injury and is essence becomes a separate growth.

So the plan for now is to put Kiya on antibiotics for 10 days to rid her of infection and allow time for the skin to heal. Then we have no idea. I sent pictures of the keloid to our nurse at Shriners and she is going to consult with our doctor.  It appears we will have two options. Remove the keloid, allow that to heal and cast again with extra precautions or leave the keloid, cast and use extra precautions. We are in a holding pattern for now.

Kiya is cast free for at least the next 3 weeks which means we get baths, squishy hugs and some extra worrying. I am trying not to think about all of this time out of cast. We took her out 2 weeks early.

I have such mixed feeling about this whole thing. I know we had no choice and I know everything happens for a reason. So I am going to try and enjoy this bonus time with Kiya cast free. I am loving the hugs and seeing her walking cast free and I will try not to worry too much about her curvy back.

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.

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.

15 month check up

Today was Kiya's 15 month check up. I surprisingly had to wake her up at 8:15 so we had time for breakfast and could get out the door. This didn't go so well. Kiya HATES to be woken up so she was a tad crabby for her appointment but she managed.

Here are the numbers:
Weight: 22.7lbs (39th percentile)
Height: 31 inches (60th percentile)
Head: 46 cm (50th percentile)

Since her one year check up, Kiya has gained over a pound and a half and grown almost 2 inches in height and 2 centimeters in head circumference.

To think 10 months ago she was in the 5th percentile for height, and less than 5th percentile for weight and head circumference. She is doing just great! The doctor was very pleased with the numbers and just how well Kiya is doing.

She met all of the developmental milestones except walking of course. She gives kisses, turns pages in books, scribbles with a crayon, can point out body parts, etc. In terms of the walking the doctor isn't concerned but is glad we are consulting with a therapist and recommends we keep with that. She noted that the therapist is not concerned yet so neither is she.

They asked me how many actual words she says and I responded 12-15. Now to be clear she can say that many words but uses some more than others. She can now say: mama, dada, doggy, ball, uh oh, no, up, hi, bye bye, mouth (minus the th), that (dat), bow wow, ruff, papa (she says this sometimes for puppy and grandpa), daddy, mommy, ear (ee while pointing at ear, oh and she can moo like a cow. She says a bunch of other sounds too but we can't figure out what she is talking about yet. Bubba is a favorite and we aren't sure yet what she is trying to say--maybe Badger....guess we shall see.

The doctor was thrilled with her speech development. She couldn't believe she was ever behind in her speech. She was also impressed with how much Kiya understands. She responds (not very well) to the word no and she can follow simple directions like touch your head or can you switch hands (transfer toy to other hand). We say this a lot when she is getting dressed and undressed.

Kiya got 3 shots today :( But won't get anymore until she is 2 :) We couldn't get a good look at her teeth but it appears that she now has 6. She is getting two more on the top.

We made her 18 month check up appointment for June. I can't wait to see what she is doing and saying then. Fingers crossed she is walking by then and if not we will move on to plan B with that one but for now we are just thrilled to keep watching Kiya discover new things and grow big and strong.

27 days

27 days until Miss Kiya's first birthday. :)

And so far 2 days in a row of blog posts :) I am chatty but this may be tough to come up with 30 posts that are even remotely interesting. At least I get Wednesday's off for pictures and you may just see more pictures as time is tight. Of all months for 30 posts this is it. There is a lot going on in our growing family this month. Dossier prep, 1st birthdays, playgroups, Thanksgiving, etc.

So for today's lovely rant: The perfect baby?

Why is it that other parents make assumptions of what kids should be doing and shouldn't be doing based on an age? I know you are probably tired of my complaining about people comparing babies but really enough is enough already. Every kid is different!

Sure I read the charts of developmental milestones. I get my babycenter.com emails and I read my "What to Expect the First Year" book. And yes there are things on all of those lists that say Kiya should be able to do certain things and she has yet to do them. Can she do them, yes I think she can. Why isn't she--ask her.

That said, if I read ahead a few months to see what to expect she is already doing some of those things that are expected of older kids. She can feed herself, she can drink from a cup, she can bend at the waist and pick up a toy. She babbles like it is her own little language. I could go on. She is developing on her timeline so if she skips things now to do other things that is okay. She doesn't have to go in order. It isn't a rule.

I guess my frustration lies in the judgement I sometimes see in other parent's questions that some how Kiya isn't developing well. I on the contrary think she is doing just fine. She has been evaluated by her doctor. Her doctor said most kids don't walk until after they are 1 years old so why does almost everyone expect Kiya to be walking?

Do I think her gross motor skills are delayed--maybe a little. Is she outside the range of normal? No she isn't so therefore I am not concerned. She couldn't stand at all at homecoming and when evaluated by Birth to 3 at 7 months she could for just a little bit so 4 months later for her to be walking while holding our fingers and standing up playing with toys is GREAT.

Why is there so much pressure for kids to exceed all milestones and be super smart? Why are their infomercials selling parents products to make their baby read? Why do babies need to read? I just don't see the need to put so much pressure on little ones. She will do everything she needs to when she wants to and when she is ready. It isn't for me to decide or force on her at this point. If she isn't walking by 18 months then we will intervene. She grew so tall in such a short time the doctor thinks she just has to get used to her new limbs and how to move them all together.

I look at it this way. She has been through so much in such a short time. How she is processing that is hard to say. She has been with us longer than she was in Ethiopia. This is the longest she has been in one place with the same caregivers. She is a strong and stubborn little angel. She has some confidence issues and is learning to trust. She is curious and a daredevil and can be a little shy. We can see the wheels turning and right now that is all that matters.

Kiya update

Isn't she cute? Well, poor Kiya has had a rough few days full of doctor's appointments and attempts at blood draws. We had to see a Pediatric Gastroenterologist for a follow up since she tested positive for the Hepatitis C antibodies. She has tested negative for the virus but we aren't out of the woods so our regular doctor recommend we see a specialist for a game plan etc.

Well we were less than thrilled with the experience at this clinic. It started with the receptionist calling Kiya a him even though she was dressed in pink. It was followed by the nurse getting upset that we didn't fill out the questionnaire which had 1/3 of the questions about my pregnancy and another 1/3 about mother's health. I politely wrote on the form that Kiya was adopted.

Well the nurse then went on to ask how to say Kiya's Ethiopian name as we haven't changed that with insurance yet so I told her. She then asked me if we were going to change it. I told her we were and she said "oh that's good. We can't have a name like that here in America." Really?

She went on to comment about how lucky Kiya was to get out of Ethiopia and make assumptions about the lack of medical care she could have received while in Ethiopia. I kindly pointed out that we have ZERO doubt that our daughter was VERY well taken care of during her time in Ethiopia. We met the doctor and the nurses and were very pleased with the level of care, concern and compassion. The nurse was in shock that they had vaccines in Ethiopia and assumed we would just revaccinate to make sure. I politely told her no we were not revaccinating as we ran titers and her vaccines were all fine.

By this point I was getting annoyed, well it got worse. The doctor came in and obviously didn't read my daughter's file or the questionnaire I filled out that listed that my daughter is from Ethiopia. He assumed that I was Hepatitis C positive and that is how Kiya had the antibodies. Really?

We came up with a game plan for the next 7 months or so which unfortunately include some more blood tests. We went to the lab that day and wow, let's just say I left with a screaming baby in tears. They too kept calling Kiya a him and the people at that lab had no idea how to draw blood from an infant. I know and realize it can be challenging but you should never say in front of a mom "I am not sure if this is a tendon or a vein, let's try it and see what happens." If this in fact was the case, do me a favor, leave the room and discuss with a colleague out in the hall.

So we had to go in to our regular clinic today for the blood draw and due to the tests that were ordered and Kiya's size, we weren't able to get all the blood today. We have to go back next week for the rest. Poor baby...

Rough few days

Well just when we thought things were settling in to a new normal a surprise popped up. Miss Peanut has developed these coughing fits during bottle feedings. Why? Well we don't know and neither does the doctor. There are a couple theories floating around and we are looking in to all of them.

First, we switched her to soy formula thinking in might have been a milk tolerance issue. She has had this raspy breathing thing going on so we figured we would try it and see if the soy would help. The raspy breathing seems to be getting better but the coughing is still there.

We took her to our doctor this morning and no ear infection present,lungs are clear and overall she seemed fine. The doctor would like us to visit the feeding clinic for an evaluation since the coughing is at its worst during her bottle feedings. It could be nothing or it may be reflux (minus the excessive spitting up and vomiting, she doesn't do either of those things so if it is reflux it isn't severe but still annoying for Peanut).

She is teething which is definitely affecting her mood and her eating so it could be that. There are so many possibilities and not a lot of answers right now and that is tough. As a Mom, I hate that my baby girl is uncomfortable and I can't just snap my fingers and fix it. It got so bad last night that she went to bed without a bottle. She was just screaming and refusing to eat so we didn't want to force her so we calmed her down and put her to bed. She slept for over 10 hours straight.

Today it took three different bottles/sippy cups to get 7 ounces of formula in her in an hour time span. She would drink a little and then scream so we took a break. We tried again and she drank some more and then screamed. On the third and what I determined last try and back to the bottles we used in Ethiopia, she coughed less and finished the last 5 ounces without throwing a single fit.

The hardest part is that this is recent. She was doing so well and overall she still is. She eats her solids really well with little to no coughing and she is gaining weight so that is all good news. We just need to get some answers for this coughing thing so we can focus on the fun stuff.

Perfect baby???

Ok--most mom's will tell you that their child is perfect and yes I am going to be one of them.

We have been home almost a week and things are going WAY better than expected. Sure the first couple of nights took some getting used to and last night both Dave and I were like we have a daughter; this is the real deal no one can take her away. Oh My!

Jet lag seems to be gone. Miss Peanut is sleeping 8-9 hours a night. Some nights she wakes herself at 2am or 4am with a little scream and then back to sleep she goes. The first few times that happened I hopped out of bed to check on her and as I walked into her room she was sucking on her fingers, quiet and asleep.

She eats like a champ. Mostly formula and then rice cereal and baby food to supplement. Carrots are a crowd pleaser; she just loves them. Peaches are a work in progress. We will try squash or sweet potatoes next. It sure will be nice to get a list of foods she can eat. This whole eating the same food for a few days to make sure there isn't an allergy is kind of boring but necessary.

We thought for sure we were going to have sleep issues, food issues and maybe illness/parasite issues when we got home. I would say for now the sleep issues have resolved. The food issues are still there in that she can't eat fast enough but it is getting better. The illness/parasite stuff is a work in progress. She came home with an ear infection (though she was an angel all the way home) and we are testing her still for parasites but from what I read I would think we would be able to smell/tell if she has them and we don't think she does but testing just to be sure.

Our pediatrician is FABULOUS! She was so prepared and knew just what to test for in internationally adopted children. We are catching her up on the pneumonia vaccine but all others are listed as current and received in Ethiopia. We will run titers in July just to make sure since we are doing more blood work in July anyway. Peanut is now 13lbs (or was on Monday) and 25.5 inches long. She is on the CDC growth charts for height and barely for weight and not at all for head circumference. The doctor is not concerned. Peanut's head has followed along the same line since referral so it is growing and may just be a small head. Developmentally, the doc thinks Peanut is doing fabulous. She is a little weak in the legs so she gave us the number for the Birth to 3 program in our state so we can call and have her assessed and maybe start some physical therapy. Nothing terrible just hasn't had a lot of practice using those legs.

We truly have the most wonderful baby. She laughs, smiles, squeals and is most of the time a joy to be around. Beware if she is hungry as she has a set of lungs that are sure to tell you that she needs food and needs it now. Okay time for me to make some coffee while little one is down for her morning nap.

Shopping for baby stuff is fun!

So I just had to go to Target yesterday and well here is part of what happened :)

Baby Hangers:

I can't help myself. It is all just so cute. I also picked out some gifts for some dear friends as well. It was a blast :)

Today I had my first real Mom freak out. It was minor and some smart women I know told me to take a deep breath and relax. They are right. We sent Peanut's growth updates to the doctor and she said that Peanut is not on the charts for weight or head circumference and that she wished there had been a little more catching up. She also said it wasn't too worrisome so far and that we will see what next months numbers look like since the stress of a new environment takes a toll. Well, I didn't really read much of her email past not on the charts and more catching up. I freaked a little which I am told is very normal and I am also told that Peanut is doing great. Gaining is good. I also have to remember that I have it on good authority that she is doing quite well at the Care Center. I am glad I am using the doctor that I am as she tells it like it is but reading that at 6am with no coffee was probably not the best of ideas.