I think we might have a little animal lover on our hands.
Okay, I know I am a little late with this, but on Saturday Emilia was five weeks home with us.
The last two weeks with Emilia have been great in terms of attachment. She is more interested now in being held and kissed and cuddled. She also loves tickles and makes amazing eye contact. She’s not staying as much to the sidelines, but spending more time close to Craig, Rex and me. During our Christmas get-away Emilia fell asleep in my arms for the first time and that same day, she chose me over a toy. She picked up the toy, then looked at me, then the toy, dropped the toy and walked into my arms. It was magical considering how much this child is content to sit in a corner with a piece of string and play her own little games. We realize that bonding and the formation of trust are essential as they will be the motivators for Emilia to learn. Right now, she is still very reluctant to perform any new developmental tasks for either of us because I think she does not expect anything positive to come from her efforts.
As you know, the challenge of the last two weeks has been Emilia’s eating, but we are making progress. The feeding team wanted me to give her 24 ounces a day of a soy nutritional supplement, but I realized quickly that this was way too much for her and that if served after lunch, the supplement makes her reflux. So, I am giving Emilia 8 ounces of the supplement each morning which is basically her breakfast. Sometimes she eats a little something extra, sometimes not. I also discovered she likes foods that pack a huge caloric punch with little volume, so almond butter, olive oil, and walnut oil have been my allies. I can mix them into her fruit and vegetable purees and even her soy yogurt and she doesn’t even blink. Her daily caloric intake is about 750 now which makes me very happy. If we get another 100 calories per day into her soon, she will hopefully start to grow. Emilia is also beginning to drink fruit juice thickened with pureed fruit and just yesterday she took four small bites of French toast off a fork. Yes folks, you heard it here first, she showed interest in solids and gave them a try.
Emilia had a rough go with bath time at first, but we soon figured out that she loves to hear the water run into the tub and will then sit or stand in it with no crying and allow herself to be washed. This behavior had a positive effect on Rex because he decided he could handle standing in the water, too. Both kids love to play in the dry tub now as well. Unlike Rex, Emilia does like to watch TV with her favorite being Baby Einstein selections.
My virtual twins are beginning to be a bit more interactive with each other. I have seen them make attempts at sharing toys and at engaging the other one. While we visited friends over Christmas, we all bunked on an air mattress and the kids would cuddle up to each other in their sleep. Such a sweet sight for Craig and me to behold.
The following referrals were issued in IAC Session 201 which was held on 11/18/11:
1) U.S. dossier from December 2008 referred a female child aged 2 years and 2 months, lags behind in PMR
2) Great Britain/Northern Ireland dossier from January 2009 referred a male child aged 1 year and 7 months with peculiarities in health status, including family history
3) German dossier from March 2009 referred a male child aged 4 years and 8 months
4) Dutch dossier from June 2009 referred male twins, aged 4 years and 6 months
5) Italian dossier from June 2009 referred a male child aged 6 years and 3 months with peculiarities in health status in terms of mental development
6) U.S. dossier from December 2009 referred a female child aged 2 years and 6 months with peculiarities in health status in terms of physical and NDP
7) U.S dossier from March 2010 referred a female child aged 1 year and 8 months with peculiarities in health status, physical, NDP and infectious disease
8) Italian dossier from June 2010 referred a male child aged 8 years and 3 months
9) U.S. dossier from July 2010 referred a waiting child (#591) with a profile on the MOJ site
10) Italian dossier from October 2010 referred a male child aged 9 years and 3 months
11) Italian dossier from May 2011 referred a waiting child (#1656) with a profile on the MOJ site
12) Italian dossier from June 2011 referred a female child aged 9 years and 10 months
13) Italian dossier from July 2011 referred a brother and sister, aged 4 years and 9 months and 6 years and 5 months with peculiarities in health status, lag in FF and NDP
14) Italian dossier from November 2011 referred a waiting child (#1509) with a profile on the MOJ site
15) U.S. dossier from November 2011 referred a waiting child (#1024) with a profile on the MOJ site
16) U.S. dossier from November 2011 referred a waiting child (#1328) with a profile on the MOJ site
17) U.S. dossier from November 2011 referred a waiting child (#994) with a profile on the MOJ site
18) U.S. dossier from November 2011 referred a waiting child (#115) with a profile on the MOJ site
(Again, my blog is formatting at will and cutting this entry off at the beginning of each paragraph. Argh! If anyone knows how to fix this, please let me know.)
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Emilia had a great time exploring this holiday season. She found things like this tiny entry space with lights and fabric around the bottom of a Christmas tree:
Someone left a guitar out for her to examine:
And the brand new puppy's (not ours) brand new cage seemed like a fine place to play to her:
Then the Christmas tree finally caught her attention:
P.S. I don't know why my blog is deciding to do its own text formatting lately. I can't seem to fix it, but hope it stops soon. I'm sorry for how silly this entry looks.
Happy first Christmas, little one. You're a treasured gift.
Today marks nineteen weeks home and twenty-one weeks out of the orphanage for Rex. The last two weeks have still been quite a challenge with him, presenting a mix of terrible, horrible, no good, very bad days and then wonderful days where Rex has been happy and relaxed, open to learning and loving.
Developmentally, we have seen an increase in Rex’s use of sign language, especially for the word eat. He’s also doing a lot of babbling with intonation, for example, at times it sounds like he is asking a question in a language I don’t know. He also has learned how to turn buttons on toys (fortunately not doorknobs yet), improved his pincer grip very much, and also walks much smoother from one surface to another. No more stopping to go up and down from the hardwood floor to the exercise mat at OT, for instance. He’s doing a lot of climbing with the help of his step stool and balancing on top of mattresses and couches. This is great exercise for his muscles and equilibrium, so we are happy to see it. Rex wants to go upstairs a lot now, too, in an effort to expand his territory of exploration. One day I had left my toothbrush loaded with toothpaste on the master bath sink and when I came back to finish, I found Rex attempting to brush his own teeth with it. I guess this means he gets daddy's nightly efforts at dental hygiene. Rex still really dislikes fine motor tasks and gives me a hard time when I make him do them anyway.
Rex and Emilia continue to get to know each other and to figure out what this siblinghood might be about. They have now shared the same space at the same time or used the same toy together on occasion. I am not talking about interactive play, but they might both sit there and listen to the same musical toy or both lounge on the trampoline simultaneously. And they imitate each other’s sounds: one coughs and so will the other, one laughs and the other will join in. There have been times in the car where it sounded like a very animated conversation was happening in the back seat which makes Craig and me smile.
I also want to tell you about our nap time, but it’s so special to me that I plan to devote an entire entry to the topic soon. For now, I’ll just say that I think Rex is well attached to both of us. He is terribly jealous of Emilia when she receives any attention from HIS daddy and he demands his bedtime story and snuggle time with Craig every single night. Rex frequently checks back with me now when we are at therapy sessions and gives me wonderful eye contact at home. I have been able to sneak a few kisses on the lips from him and he lets me hold and rub his hands when we sit together. And he lets me place his hands on my face now and gently move them around. Remember, this is the child who would crane away from hugs, kisses and other physical contact and not allow anyone to touch his face or hands. But love!
Parenting a child with many special needs is really hard and I am exhausted at the end of the day, but I cannot imagine Rex not being here with us and I shudder to think what would have happened to him had he stayed at the orphanage. He is my love through and through, more and more each day.
Does he look like he's at least a little bit sorry for his misdemeanor?
This morning Emilia had her appointment with the feeding team at Cincinnati Children’s Hospital. They confirmed what I had already suspected: that Emilia has a moderate allergy to milk. This means no more cow’s milk, no more traditional yogurt, no more oh so delicious butter in her diet, at least for now. I had actually already stopped giving her most dairy on Friday and her BMs per day dropped from six or more to two or less. Since then she also has been able to sleep through the night like an angel, no tossing and turning, no whimpering, crying and random sounds, and no wee hour play time.
The problem is that Emilia does not eat enough calories per day and does not drink enough liquid. The feeding team would like her to have 800-900 calories daily to gain weight and drink 24 ounces of liquid. The last week or so she has been eating between 400-600 calories per day, including drinking Pediasure to the tune of about 6 to 8 ounces only. Now, her purees are still pretty liquidy and do provide some hydration, but I was still worried.
I knew Pediasure would no longer be an option for us because it contains milk ingredients, so we have been given two similar products to test which are soy based. They have a lot of calories and vitamins/minerals. I doubt Emilia will be drinking 24 ounces of anything any time soon, but I am going to try. Plus, I am supposed to continue to offer her light purees. Wish me luck!
Lastly, Emilia has a pretty significant iron deficiency, so we have been prescribed a liquid iron supplement to see if her iron levels will come up. There’s a possibility that they might not in which case her doctors already know the reason which is genetic and of no concern at this time.
I am glad that after a month of guessing and experimenting, we are finally finding some answers for our little girl. Everyone please send her good thoughts to increase her calorie and liquid intake in the next days and weeks.
Can't wait to meet them when they have settled in a little bit.
Well, today was a hard day and I figure I should memorialize one of those, too, for the kids to read when they are older, so here goes.
Emilia and I got up at 5:20 this morning, not because we really had to but because she was ready. No big deal, I don’t mind getting up early. The guys got up around 6 and by 7 am we were on the road to Cincinnati Children’s. Rex hadn’t eaten breakfast, but that’s not uncommon on these early mornings. I didn’t give Emilia anything to eat because we wanted her to poop at the hospital for a fecal fat study. The stool has to be less than an hour old when it reaches the lab. Since she poops like clock-work after every meal and then some, we figured we’d feed her there and then simply wait for her to produce the sample.
Craig dropped Rex and me off at OT and headed to the lab where Emilia needed additional bloodwork, too. We were slated to meet again around 9:15 at the Rubinstein Library which is part of CCHMC. Rex had a tough OT session with some tears as his therapist was really pushing the fine motor activities. Then we unexpectedly waited for over an hour for Craig and Emilia. I was able to entertain Rex with a snack and some games for a while, but eventually he got fussy and I had to hold him and smile politely at the passers-by who wondered while my child was screaming. When Craig and Emilia finally came, I learned that despite eating her entire breakfast, Emilia decided not to poop this morning, so we set out for home with only partially accomplished medical tasks. As we pulled into our driveway, Rex began to vomit. I had no idea such a tiny body could bring so much food back up. It was gross and incredible at the same time. I don’t have to go into the details of cleaning up a pukey toddler, car seat and car… I am sure you know.
After two hours at home in which the kids neither rested nor ate, we headed back out to our first ophthalmologist visit. Emilia did very well there and her eyes are most likely fine, but Rex lost it during the exam. He screamed and kicked and wanted nothing to do with any of it. His eyes had to be dilated twice because they are so dark. The doctor was super nice about it all and tried to do her best. She suspects that something might be wrong with Rex’s left eye, but she wants to see him again in six weeks, hopefully in a more cooperative mood. If the symptoms persist, he may have to go for an MRI, but I won’t worry about that yet.
The eye exams took two hours, so we decided to get carry-out for dinner. Made a quick stop at Whole Foods and a nearby restaurant and returned home. Since we’ve walked into the door, Emilia has pooped three times and Rex has found a new place to climb unassisted:
Now, just in case you think this day was all bad, it wasn’t. They never are. Some highlights included: a delicious dinner I didn’t have to cook, free toys (wooden puzzle and peg board) to keep forever from the Rubinstein Library, December temps in the high 40s, a real hug from Rex after his eye exam, and spending the whole day with my awesome husband. If we can squeeze in an episode of Dexter tonight after the kids go to sleep, I’ll even call it a good day ;).
The following referrals were issued in IAC Session 199 which was held on 11/04/11:
1) Spanish dossier from December 2008 referred a female child aged 1 year and 10 months with peculiarities in health status
2) Canadian dossier from March 2009 referred a male child, aged 5 years and 5 months
3) French dossier from December 2009 referred a male child aged 7 years 1 month
4) U.S. dossier from December 2009 referred a male child aged 7 years and 7 months
5) U.S. dossier from December 2009 referred two female children/ biological sisters / aged respectively: 2 years and 11 months and 4 years and 11 months with physical characteristics and NP development
6) Spanish dossier from October 2010 referred a female child, aged 9 years 2 months
7) Italian dossier from October 2010 referred two children female and male / biological sister and brother / aged respectively: 6 years and 7 months and 7 years and 6 months with physical characteristics and NP development
8) U.S. dossier from May 2011 referred a female child aged 2 years and 7 months, data on family history
9) U.S. dossier from October 2011 referred a waiting child (#653) with a profile on the MOJ site
10) Italian dossier from November 2011 referred two waiting children (#1646 & #1647) with profiles on the MOJ site
Yesterday we had our first post-placement visit for Emilia which means she has been home for three weeks with us now. The last two weeks have been quite wonderful as Emilia has really come out of her shell. We now know the sound of her laughter, something we didn’t hear even once while at the orphanage or in Bulgaria. She is not scared of us anymore when we come near. She smiles when she sees me, especially in the morning when I get her out of her crib. She cries when hungry or thirsty finally. She has figured out how to climb into her high chair with no help which is a little scary. She has learned how to maneuver her push cart all over the downstairs and how to get out of corners with it when stuck, too. Emilia says four Bulgarian words, two of them frequently. We hear “ne ne ne” emphatically at bath time and whenever she is not happy with us and we hear “die die die (give me, give me, give me)” whenever she wants to be picked up, bounced, tossed into the air, etc. Her orphanage behaviors are decreasing. We rarely hear her clicking/teeth grinding sound anymore. She still rocks a little bit and definitely continues to suck her thumb.
Emilia had her initial visit at the International Adoption Center at Cincinnati Children’s Hospital a few days ago. She weighed in at just over 17 pounds with clothes on and almost 29 inches tall. Of course, based on these measurements which put her below the third growth percentile by US standards, she received diagnoses of failure to thrive and short stature. At this time, I am not worried about either. Emilia eats much better now. She tries all the pureed foods I offer, but she’s sticking to her chocolate milk and chocolate Pediasure for drinks. We’ve tried expensive juices and other flavors of milk, we’ve tried fancy organic drinks, but no luck. Emilia continues to have several bowel movements a day. Her stool samples tested as parasite-free, so now we have to keep searching for what might be causing all of these BMs. If anyone has any ideas or advice, I’d be happy to know.
The biggest challenge with Emilia is sleeping at night. She did extremely well transitioning into the midday nap with Rex and me this week, but we simply can’t figure out how to get her to sleep through the night. It has happened once or twice, but most nights, she needs a snack in the wee hours and then she frequently decides it’s a fine time to play for a good while. Even when she does sleep, she is usually rather restless and occasionally makes these little sounds that don’t seem to wake her, but jolt the rest of us. Craig and I are both very tired and we joke that we are like ships in the night, passing each other in taking turns with Emilia, going back and forth between two bedrooms, mostly so that one of us and Rex can get some sound sleep.
Overall, Emilia’s transition to our family thus far has been very smooth. She continues to approach her stand-offish brother for contact and is slowly chipping away at his defenses. She’s a sweet, curious, determined child who showers us with great eye contact and smiles. I have a feeling that this tiny treasure is going to grab life by the horns and take us all for quite a ride.
Yesterday marked seventeen weeks home and nineteen weeks out of the orphanage for Rex.
The last two weeks have been really hard; hard on Rex and hard on us as his parents. Rex is being the super squeaky wheel here and requiring a lot of grease. The major change of becoming a big brother has thrown him off kilter and brought back some of Rex’s auto-aggressive behaviors. We’re not seeing rages, but there’s plenty of slapping and hitting his own head and face and some screaming, too. He is insecure and easily frustrated. So, we have been doing what we know worked in the past: holding and re-directing, lots of attention, lots of snuggles. After three weeks of this regression, it seems that the corner we need to turn as a family is in sight.
Developmentally, I think Rex is taking a little hiatus. I don’t blame him. He has a lot to process as it is and hey, it’s the holidays. He re-took the Denver II developmental assessment this week (of course, not showing off his skills to the therapist) and is now at 18 months gross motor, 11 months fine motor, 11 months language, and 12 months social-emotional. That’s progress in all areas, slow but steady. I don’t know if he will ever catch up to his peers, but if so, I expect it will be years down the road. We are going to take it easy for the rest of this month, just working on helping Rex find his footing again, and then start focusing heavily on speech and fine motor skills in January. Rex continues to reap wonderful benefits from his OT and also receives ABA therapy in-home.
After doing some research and hearing from other parents whose children have Rex’s syndrome, we are experimenting with a creatine supplement for Rex. Some parents have found a great increase in muscle tone and, therefore, motor development and some positive effects on cognitive function once their children started taking creatine. We’ve only been using it for a week, every other day, and I am not yet noticing any changes, but there’s a lot going on, too, so I might be missing it. I am also going to start adding fish oil and B vitamins to Rex’s diet as this seems to aid some children with speech development.
Rex does love the good times and enjoys tickles, music, kisses, and rough-housing with his daddy very much now. He is joyful and likes to have fun. I believe that this is truly who Rex is meant to be and if we can keep chipping away at the hurt, disappointments, and frustrations, more and more of his wondrous personality will emerge.
And overnight, der Nikolaus brought them Christmas pajamas and a playdough set.
In the morning, Emilia was quite excited when she discovered the loot.
What a great first Nikolaustag!
Yesterday we attended a wonderful Christmas party organized by Cincinnati Children’s Hospital especially with children who have developmental and physical disabilities in mind. We are so glad we went because Rex had a blast. The party included a live band with four instruments (a tenor saxophone, a banjo, a trumpet, and a double bass) and because Rex LOVES music, he was immediately drawn in and fascinated. At first he stood and looked, then he clapped to the beat and danced. Finally the musicians were incredibly kind and indulgent to him, allowing Rex to spend the length of entire songs placing his hands right on their instruments and feeling the vibrations while enjoying the music. The band leader kept telling us, “It’s okay, he’s with the band.”
We raised $1415 and spent $1421.23 on items delivered during four trips to two orphanages. 
