Wednesday, September 1, 2010

Today I have been thinking about what genuinely good and decent people there are in the world. And how blessed we are to know so many of them. Did you know that we have received several packages in the mail in the last few weeks. Some were people I've never met before, who heard about our need for clothes for Zoya, and rummaged  through their kids' closets or shopped on ebay. One sent gifts for the other kids too, just so they wouldn't feel left out. I posted a message on an adoption yahoo group, and a random stranger who I had never spoken to sent us two cans of nutritional supplement to help Zoya put on some pounds. I am encouraged that there are people like this in the world who have a soft spot for children and who go out of their way to help a friend or a stranger in need, even if it means having to pay for shipping. Thanks to all of you.

Zoya continues to pick at her food. The odd thing is the orphanage told us she had a very good appetite. We can't figure it out. Last week I took Hope to the pediatrician (she ended up having croup BTW, bless her little heart). I went ahead and took Zoya and had her weighed. I was thinking I would encourage myself by seeing some progress on the scale.  I add butter, Karo syrup, cream, half and half, mayonnaise, ranch dressing etc to her foods hoping to sneak in a few more calories. I make her carnation instant breakfast with whole milk and karo (which she will barely touch). While the rest of us have skim milk in our cereal, Zoya gets whipping cream. Would you believe in 3 weeks she hasn't gain a single ounce??? :( Not even one.

So we will keep working. It has been time consuming and tiring but she is so worth it to me. Meanwhile I have asked three times for a consultation with a cleft palate specialist, and haven't heard back one word. Sigh. Should I keep calling or be patient? They keep telling me they will call. I watch her eat and what I think is happening is that she has worked for so long to keep the food from coming out of her nose, that eating has just never been a pleasant experience for her. She sniffs when she drinks and it appears that this is how she has mastered getting the food and liquids down. We have another appointment in a couple of weeks so hopefully we should have a better plan then.

So many things are making sense to me now.
1. Why the nannies tucked Joseph's shirt in and pulled his waistband up to his armpits
2. Why Joseph was not allowed to play with the water hose
3. Why he had so many scrapes and bruises the day we met him
4. Why the Nanny kissed me on both cheeks and shed a tear when we arrived to adopt him. ha ha ha

He is as busy as a bee, and has his second black eye since he's been here. Remember he was already missing his front tooth so he looks like a hockey player. We have finally figured out a plan to keep him contained in a safe child friendly area and we are all much happier. He is really the sweetest thing, and just a little bit ago when I put him to bed he motioned for me to lay down with him, which I did, and he pulled the blanket up over me and smiled. I am so in love with that boy.

John told me yesterday that our former babysitter Christina messaged him and said she was going to be coming home from college this weekend and wants to babysit our kids for us. All 7 of them. I am so excited!! See what I mean about the good people in this world?

19 comments:

Amy L said...

Joseph sounds like he could be Caleb's twin, or at least his little protege!:):)

Rachel said...

Hello there,
I have been following your blog for MONTHS. I found the link to RR through your blog, and we're now adopting a little boy! "Joshua"! Reading about Ava really helped our decision.
I just wanted to let you know how awesome your family is!
Rachel

Sarah said...

HI!
I have been following your blog for what has problem been over a year, but never commented! I love and admire your whole family! I wanted to say you can call as many times as you want to the doctors. I've found that the more you call, the more irritated the office people get, and the quicker you get the appointment(or referrel). I think doctor's offices forget who they work for...YOU! and there is no harm is calling them to remind them!
Sarah

Anonymous said...

I really think that repairing Zoya's cleft will improve her feeding. Even at 1 year old my daughter had an aversion to eating because of choking experiences. Once her cleft was repaired she shot up from the 5th% percentile in weight to the 50th% in just 3 months. Good luck to you and your beautiful babies.

Charissa said...

Thanks you guys! Anonymous, that is really nice to know. I'm encouraged.

Amanda said...

If you can switch to ensure pluss it has more calorie. The drugstores and walmart sell them comparable to carnation. Also they make pudding and juice. Never seen generic though. Also the doctor maybe able to prescribe you flavorless protein powder. It will help build some muscle and can go in anything.
Ananya has only gained 7 lbs in 3 1/2 years. She is looking better too. Oh yeah she has difficulty chewing so everything went in the blender. We still do it with ground meat some. I think she helped me gain 10 lbs.
Keep calling for her appointments. They should at least connect you. If not ask tospeak to an office manager of the doctor next time you see him. It is important for her weight too.
She reminds me of ananya with her skinny legs. Soo cute.

Gretchen said...

Very sweet!

Rhonda Sloup said...

I have a little girl with Fetal Methotrexate Syndrome and one of the problems is growth issues. We use the carnation. (she didn't like the ensure and will only drink the strawberry carnation) We also give her vitamins and just search for things she will eat.

I make multiple calls to doctors. I don't want her to fall through the cracks. We see most of her doctors in OKC, but were so frustrated with the orthopedics that we started going to Shriners. I think Houston is the closest for cleft.

Good luck. I hope you get some answers soon. They're cuties.

Michelle said...

Oh! I have been reading and looking at all your pictures and praying that Zoya was gaining weight. I thought she was looking a little fuller in the last pictures if that makes you feel better!! :) I am praying that you will get to see the right doctors soon! I just love reading about all your kiddies and maybe if you come out to California sometime we can all go on a picnic! :)

Maria said...

What goes around comes around - people are good to you and your family because you deserve it. You are making the world a brighter place for Ava, Joseph and Zoya, so it is only natural that this wonderful love comes back to you!

P.S. That is SO funny re Joseph's pants pulled up to his armpits!!

Bethany said...

I wonder if plumpy nut would help to get some easy calories in.

Anonymous said...

Oh, how special is that girl to come babysit for you! Take her up on the offer and get out of the house for a couple of hours.

You are a special lady and we all realize it. We are the ones lucky to have met you!

Jan

Lisa (DanielsMommy) said...

Loved the pics!! Your entire family looks so happy!! I hope you get into a doc soon for Zoya...she will be able to enjoy a meal and pack on some weight. Bless her little body. Joseph just makes me laugh since I know SO well what you are going through...my Daniel is much the same!! I'd love to see them play together someday!!

Susan said...

I have not gone through all the posts to really know if this is something that you may have considered or have experience with so I apologize in advance. You may consider an evaluation for sensory processing issues in both kids, which is not uncommon based on their histories. There is so much to figure out, isn't there?! I don't know where you are located but your pediatrician and/or an experienced occupational therapist would be able to guide you and make an evaluation. Good luck and congratulations on your beautiful family!

Jill said...

Have you tried giving Zoya pediasure? There are many flavors and we gave both Keith & Iryna 2 a day - expensive, but worth it. Have you tried giving her pancakes? Potatoes? Both of those things were very comforting to my kids after we adopted them. Have you given her drinks in a bottle and rocked her? I know that she's older, but we did that with our twins and they would drink really well while we did that. Just some thoughts. Good luck!

JuliAnn said...

Hello,
I feel a little silly offering advice since you are so obviously experienced and wonderful parents, but for what it is worth... I am friend of Lilya's family and I have been following your journey since about the time you announced that you were going to bring Zoya home too. Giving one child a new home is such a gift, I can't even find the words...

Anyway, my son's dietician brought us a "new" (at least to us) product last month. Its called Duocal by Nutricia. Its a super soluble powder that claims to be more affordable than instant breakfast and pediasure and have more calories... I haven't had to purchase any yet, she has been giving us samples.. but, Wes had a whole pound weight gain since we started using it. I put two scoops in each of his solids feeds (1 per day...) which is the equivalent of 50 extra calories. I haven't found anything yet that it won't dissolve in, and it doesn't add any flavor... so if can find anything that she will eat... Something to take a look at...

In terms of getting her in to see a specialist... you are her BEST advocate... keep calling and bugging them until you have a date and time. I work in healthcare and while it is so wrong, people can fall through the cracks... Even when you feel like your the biggest pain for that office to deal with, keep reminding yourself that you are her voice...

Hope this helps... thank you for sharing your journey, truly inspiring!

Christine said...

I have never heard of a cleft palate specialist. A plastic surgeon is who corrected Dennis' palate. I would call the children's hospital directly and ask for the doctor's email and email them your situation. I can't imagine anyone not being moved by your family and your new daughter and "rushing" things through for her. So-- she still has her palate unrepaired? If anything, it sounds like she has a fistula.

JKI said...

So you have plenty of comments saying this, but DEF. hound that specialists office. Leave messages detailing how underweight Zoya is and how absolutely imperative it is that she be seen asap. I have learned to be that squeaky wheel that needs the grease or it will literally be months before some offices will get back with you. If that doesn't work in I would say 1 weeks time, ask her pediatrician to make the call. Miraculous things happen when doctors call each other!

Anonymous said...

I would call back and let them know she is at risk for needing a feeding tube and it is an urgent health issue. Because even if a Doctor hasn't told you that she is. If she continues not to gain any weight they will put in a feeding tube.
I would also start seeing a gastroenterologist right away. They can sort out if there is anything else going on besides the cleft. Remember parasite tests can come back false negative she may need a GI scope. They can get you a prescription for pediasure, feeding therapy and anything else she might need.

Best of luck.