*This post is the 3rd part of an ongoing series of letters to Brianna. Click here to read Part 1 and Part 2*
Dear Brianna,
It has been a while since I wrote to you last and so much has happened since then! I look back at what I wrote about you just a few months ago and you have already changed and grown so much between then and now.
Last time I wrote you would still cry any time you were sitting up without support. Now you sit up all day - most of the time with a smile on your face. You sometimes whine at first when I make you sit up but you quickly stop and are easily calmed.
You not only tolerate toys now but actually like them. If you are upset and I give you a toy, you almost always stop crying right away and start playing with a smile on your face :)
I used to say that I couldn't wait for the day I could just have you sitting with me while I worked on the computer or was getting other things done. If I tried you would just cry until I picked you up - and then I couldn't work so it was not very productive... Well that day has come! You sit up with me all the time now and we can hang out while I work. I love it! In fact, you're sitting next to me right now as I type this. I am so happy I can now spend more time with you each day!
Your new thing you just started is wanting to be up on your feet all the time. You don't stand on your own yet and really don't like to try but you have started wanting to stand (and sometimes walk) while holding my hands. If you are sitting and I put my hands out you will now grab on to them and pull yourself up to a stand without any prompting from me. You giggle and pull my hands together to clap while you do your little wiggle dance - it's just the cutest thing ever!
We have a little baby walker and your legs are finally long enough for it to be a good size for you. Just this week you started standing up for a few seconds at a time and also figured out how to push yourself around in it - you are all over the place now! I am so excited as this is the first time you've moved around the house on your own without anyone telling you to!
Your crawling has gotten so much better - especially in the past week or two. You still won't move your arms on your own but you are staying up and carrying your weight well, crying less, and moving your legs on your own more and more often.
You have also learned how to go from a stand to a sit without falling over which is huge! You are starting to conquer your fears and I am so proud of you!
Speaking of conquering fears, you are also doing so well at staying calm when we go to new places! You are an old champ now and rarely cry when we go somewhere new anymore.
Your favorite place to go is to your friend Jaya's house. We take you and Charlotte to visit quite often and you all are starting to play so nicely together. Your favorite visits are when you all play in the kiddie pool. You splash around and giggle like you're the happiest girl in the world!
Food continues to be your biggest struggle. You are still only drinking bottles of formula with small amounts of certain foods mixed in. You will typically eat whatever is for breakfast blended with formula and water in the morning and then the rest of the day will drink formula with things like baby food, blended fruit, peanut butter, and honey mixed into it. Sometimes we can get you to eat blended rice and curry but only when diluted with water and formula and only with certain curries. You are very picky about the foods I mix into your bottle and will refuse it if I put too much in.
Because you won't eat much we've been having a hard time getting you to gain weight. While you have grown a lot since joining our family, you still only weigh 7 kgs (15.5 pounds) which is how much you weighed when you arrived - meaning you are a lot thinner now. For an almost 2 year old, you are incredibly small. The doctors and other parents of children with sensory-related eating challenges recommended getting you an NG-tube to help get some more nutrition into you and to help you gain weight. We tried but you ripped it out every time and the doctor couldn't get it to stay in. Eventually he gave up and recommended a G-tube. That didn't sit so well with us though and we wanted to get more information and advice before we jumped to surgery.
This past week we had a team of rehabilitation specialists from Switzerland come who helped assess the needs of all the SCH children, provide resources, and train staff. Both the doctor and the speech therapist who assessed you were so incredibly helpful. They both agreed that we should not go forward with a G-tube and that while your weight is definitely low, it's not as far under the normal for your height as we thought and you are still healthy. They recommended we continue doing what we are - giving you the bottles as frequently as you'll take them - getting as much in you as possible. The speech therapist pointed out a lot of your challenges with swallowing and gave me some great places to start. So right now we're just focusing on drinking through the bottle well by pacing it, drinking things with different flavors, tongue control, and putting your fingers in foods like peanut butter and bringing it to your mouth. I think it's going to take a long time to get you to real food but I'm optimistic you'll get there and so glad to have a place to start!
We've had a really hard time figuring out what is going on in that little body of yours. We are almost certain that you have Sensory Processing Disorder. At the very least you have a lot of sensory processing challenges. That is what plays so heavily into your eating struggles. Besides that though there are a lot of things that make us wonder what else you have going on. We sent you to the geneticist to check for a possible syndrome but all the testing came back normal. Next we saw a specialist who said you have scoliosis and sent us to get an x-ray to find out what kind of intervention you would need. The x-ray came back normal - no scoliosis at all. We then went to another specialist who confirmed your sensory challenges and said she thought the tightness in your limbs was spastic cerebral palsy. She sent you to get an MRI to confirm. Once again, the results came back normal - no CP...
The Swiss doctor said he felt no spasticity in your limbs and that what has been mistaken for spasticity is just you tensing up when someone touches you. I think he's totally right as you are very tense and I've always gone back and forth as you sometimes feel really tight to me and other times feel just fine. He thinks you just have some type of syndrome that has caused the lack of eyes and unique features, sensory challenges, and are delayed because of those challenges combined with growing up in an institution - nothing more. I am hoping to send you to a different genetic testing center to get retested this coming week. Either way though I'm glad we've ruled out most of the other options and to finally have some answers. I think with some more time and a lot of love, you'll do just fine.
In less than a month you will be turning 2 years old. How did you get so big?! You're still a baby to me but soon that won't be the case anymore. You're already starting to feel more and more like a toddler and I wish I could just slow down time. I feel like there isn't anywhere near enough of it.
You are my baby and being away from you for even a day is so hard. When I was in California for a whole month I felt like part of my heart was missing. And it was. It was here with you. I missed you so much and it killed me to not be with you.
I wasn't sure how you would react when I got home. You had only been in our family for 4 months when I left so I wasn't even sure how much you would remember me. I was almost nervous to see.
All that was swept away though when I walked through the gate and you heard my voice. Your face lit up and you curled into my arms the second I picked you up with a giant grin on that adorable face of yours. You knew me. You missed me. You were happy I was home.
People who don't have experience with attachment may not understand the significance of that but it is huge. You have made your first real, good, healthy attachment. That is so wonderful. I am in awe at the blessing it is to be that to you. I'm overwhelmed with gratitude that God chose me to be the first mother figure you've ever had.
It also scares me though. It's a lot of pressure. I want so badly to do right by you and give you everything you need and deserve but I feel so ill equipped to do that. Sometimes I wonder why in the world God chose me to care for you, His incredibly special daughter. But God's ways are not mine so I just pray that He equips me for the job He has given me so you can have the most full and wonderful life possible.
And then I thank Him for choosing me because being your mom is the most wonderful thing in the world.
It also hurts though because I know I can't be here for you forever. Every day I pray for the special woman who will be though. Every day I pray for your forever family to find you. I have no greater wish than to see you walk out these doors and into the arms of your forever mom.
This 4th of July I got you all dressed up in your American dress and we celebrated America's independence together. That day I got a picture in my head of you running around, celebrating with your family in America and it brought tears to my eyes.
I know God has a forever family for you. I have to hold on to that hope. I pray that one day you will be reading these letters about your life here in India with your parents. And I pray that they find you soon.
I'm also going to ask all of our friends who are reading this right now to pray with me.
There is another woman I also pray for. 2 years ago I was here in India for the first time and somewhere else not too far away was a woman who was pregnant with the most perfect little baby. By the time I got back a few months later that baby was in an orphanage and that woman had given up the most beautiful gift she had ever been given without knowing it. One more year passed by before that incredibly perfect gift was placed in my arms. At that moment I knew my life would never be the same.
That gift was you.
And I pray for that woman. I really just want to be angry with her for giving you up and leaving you behind but I'm also aware that I don't know what circumstances she was in or why she made the choice that she did. All I know is that I feel both sad for her and grateful for her.
I feel sad for her because she never got the chance to know you. She didn't know the immense gift she had.
I am grateful for her because without her you wouldn't be here today. Your birth mother gave me a beautiful gift - the chance to know and love you.
And that is the most wonderful thing in the world.
You are loved, Baby. So very loved.
Just the other day all of your older foster siblings started asking me if they could hold you. You were incredibly patient with them as they passed you around, all taking turns holding the "baby." The love and pride they each looked down on you with brought tears to my eyes. Your brothers and sisters here love you so much.
You are doted on and so loved by your ayah, Laxmi and her son, Kumar.
And I love you. So very much. So much it hurts.
I am wonderfully blessed to have you in my life and I am proud to call you my little girl.
All my love,
Tori amma
*To gain access to read this post with all of its adorable pictures and videos, sign up for my email updates where you will get weekly (ish) emails with updates on our family and links to the photo versions of all my blog posts with the password. You can sign up here through this link: http://eepurl.com/bg3tH1*
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