Emma's Hope

We are asking everyone to please pray for little Emma.

Emma came home in February with her wonderful family. Her cardiologists so far are not giving Emma's mommy and daddy the news they want to hear; that she can have the surgery to repair her heart and prolong her life.

Please join us in prayer for Emma and her family. She is a sweet little angel who is loved by many. I know that prayer has the power to heal, to add comfort and hope to Emma's and her families lives.

Some of you have asked me, so I will answer your questions; yes Emma was our Eva; in Ukraine she was Daria. In the world of international adoption almost anything can happen as so many of us have learned. She is with the family God chose for her, just as Kara is with hers. (And our Joy is with hers)

We honor that choice and did not want to talk about Eva-Daria-Emma in our blog because she is with her forever family now and we in no way wanted any attention on us. Emma is loved and cherished by so many, she is in our hearts and always will be.

Thank you Angelsisters

My steadfast friends and supporters, I am so grateful for all of you. Your friendship and generosity forever amazes me. I love you all. Hugs to Meg, Debra, Dawn, CJ, Sandy, Sunny, Valda, Susie, and Phyllis, my on-line family of 10 years! (Amy, April, and Laura too)

Hmmmmm, more on getting services

Hypotonia, responsible for so many issues affecting speech and eating issues....

Kara needs feeding therapy, which is why mommy really wanted to get her into DDD services as soon as possible, they have an awesome therapist who could evaluate Kara, who still refuses to chew anything and who is choking on anything that is not mashed. Sandra from DDD, a wonderful woman and someone I respect, called yesterday and told me to try our medical insurance for it for now, prayers would be appreciated for approval. The insurance company is not receptive or kind about doing the right thing. We have had CIGNA, United Health Care, Pacific Care, Health Net, and a few others, Aetna has been the worse insurance company I have had to deal with in 12 years, they say no first, and then make you fill out claims forms to get approvals. They have a bureaucracy that is demoralizing, I was on the phone with them this week speaking to their prescription rep, and I left the call in frustrated tears, do you ever feel like you speak and folks hear blah blah blah. I am so sorry our school district ever signed on with them and cannot wait until we are with another insurance company.

I have figured it out though, I believe I have completely forgotten how to communicate with adults, and especially adults working in school districts and with medical insurance companies, maybe I spend too much time with children now?

So to recap what I was upset about Wednesday; I tried telling the Child Find folks that until we had their reports on Kara's cognitive and motor development, she could not get DDD services. You see, having Down syndrome does not automatically qualify Kara for Developmental Disability Division services. She has to have screening to show she is delayed, the occupational therapist, speech therapist, physical therapist, and the psychiatrist all need to test Kara. They then write reports that I take and copy and send to DDD. Kara is delayed enough to qualify, at 3 she does not walk, talk, is not potty trained, and she is very much like an infant in many ways, but we are talking about a system with procedures, and each one has a specific step before you can move to the next one.

The school says it is not their responsibility to let DDD know Kara has delays, no one told the school it was, I simply said I need their reports for DDD in order to determine eligibility. Since Kara is over the age of three, she is too old for early intervention services. If she was under three when we brought her home, things would have been much easier. The issue is; there are hundreds of children with speech delays, and autism spectrum, preemies, etc who also need to be screened, who are aging out of early intervention programs. The school is overwhelmed with these evaluations, and we have to take a number and wait our turn.

I am OK with this, what I am not OK with is defensiveness from the school district because mama is upset her daughter has to wait until June 3rd to finally get these evaluations. That they deny they have anything to do with the process of getting Kara DDD services, sure, it is up to the school to provide OT, PT, and ST now, but DDD can also supplement these as well as offer services such as water therapy, music therapy, feeding therapies, we need to apply for and be screened for the state medical plan, and SSI. Without the school evaluations, we have to wait for these, and it will not happen immediately after Child Find determines Kara's strengths and weaknesses either, because there are many children who also need DDD services and programs, and the state does not like approving children for ALTCCS, in fact, they denied Meghan the first time.

Everything is a process, and the process takes time. Am I impatient? I think I am about middle of the road on patience quotient. This process though has already taken 4 months. It began with Kara's Ukrainian passport and her Visa going to the Ukrainian consulate, and waiting for that to be sent back meant we had to wait to get the birth certificate, which meant we had to wait to get the SS card which meant we had to wait for intake for DDD. So, it is not just the wait for the school district that has me impatient, it is all the waiting in this process in the first place. Oh, and if you are internationally adopting a child with special needs and are from Arizona, you do not need to wait for the social security card to begin the DDD intake, I didn't know that one. Now I do, I won't make the same mistake for Amanda.

What I do like about this, is that I am learning something that may help another parent down the road, and if I can make it easier for them, then this is worth it.

More hurry up and waiting

Kara went to the school districts evaluation today, I am sad to say that they did not do the OT, PT, and ST evaluations, but a vision screen, which was impossible since she cannot talk, and a hearing screen which was a tympanogram, and not a true hearing test. Kara will need a hearing test and an eye doctor appointment. So why do these first? They said why go forward with evaluations if she has vision or hearing issues? I can see their point, but I am awfully disappointed that this is all we did today.

Why? I thought she would have a full evaluation and after the report was done, we could get it to DDD. They have told me that until they have these evaluations, Kara cannot get services. Officially Kara should get all of her services from the school district, but school is out in a month and that means she cannot get anything until September. This is unacceptable to me. She needs speech and feeding therapy NOW. OT and PT are also needed, but not as essential IMHO.

They will not be able to do Kara's evaluations until June 3rd. 6 more weeks of waiting. Kara of course could care less, but mommy is disappointed.

I wanted to add, on a positive note, Kara waved bye bye to the women at Child Find. She has not done this since we left Ukraine, of course I said paka paka, and then wave bye bye Kara, and she did it. Yea! I was so proud of her. :o)

Sunday Gratitude Log

Things get rough sometimes, that happens to everyone, but while we are struggling with some things, we have so much to be grateful for.

• Having a close and loving family whom I enjoy talking to, spending time with, and who all love each other. It is a gift I do not take for granted.
• My husband, who works so hard and does so much for us. My best friend and the man I have loved for 33 years.
• Adopting Kara before Ukraine made adoptions nearly impossible. Even though our adoption took many twists and turns, we are so very grateful God helped us find her through sweet and fragile Daria who thankfully found her forever family soon afterwards. We know this was meant to be.
• Being done with income tax filing with 2 days to spare :o) and getting a refund. PTL
• Having my first official Gold Canyon candle party next weekend. This will help us continue to raise what we need for our adoption of Amanda.
• The Down Syndrome Connection picnic this coming Saturday, I am grateful I can spend time with families who can understand parenting children with Down syndrome. I am grateful Meghan and Kara can play with their peers.
• Having friends who are always supportive even if they do not always agree with me or my plans for my family. They pray with me and for me, and I am grateful to have them in my life.
• Knowing that no matter what happens, I can always count on HF for guidance and love. I understand I will never be given more than I can handle and each trial leaves me with the gift of learning something which will help me or another person in the future.
• Receiving donations towards our adoption of Amanda. She has waited 3 years for a family, and we are so close to bringing her home.

With All our Heart"It’s so easy in life for us to receive blessings, many of them almost uncounted, and have things happen in our lives that can help change our lives, improve our lives, and bring the Spirit into our lives. But we sometimes take them for granted. How grateful we should be for the blessings that the gospel of Jesus Christ brings into our hearts and souls. I would remind all of you that if we’re ever going to show gratitude properly to our Heavenly Father, we should do it with all of our heart, might, mind, and strength—because it was He who gave us life and breath" (David B. Haight, "Were There Not Ten Cleansed?," Ensign, Nov 2002, 24).

Please add us to your prayers

We are having a difficult time right now. Kara is doing well, it is the others in our family that need prayers for healing and peace.

Roma has a $10,000 grant

I know I keep talking about little Roma, we really did love this little guy but we were not approved to adopt a son in either our home study or our I-171H, it was out of the question for us. We traveled to Ukraine to adopt one child, and we knew she would be a daughter, and the Lord helped us find Kara.

Is he perfect, of course not, he is not an angel, he is all BOY, an active lively little boy. I do think he would do best with older siblings. He and Meghan played well together, she is 3 years older than he and he did try to boss her around, but the language barrier got in his way. LOL. He was the ruler of the roost at the baby house as the oldest child there, he is used to being the boss, a younger sibling may be pushed around by him. I base my opinion on how he behaved with the younger children, still, the staff did let him get away with a wee bit more because they all loved him so much. He did listen and behave when told to.

He is talking but since it is in Russian, I could not tell you how well he enunciates. He is potty trained, he loves to dance and sing. He loved the singing competition the staff watched on TV and held a toy like a microphone while he imitated the singers. He also loved snatching up the TV remote and running away as he tried to switch channels. We heard "Roma, Roma" a lot when he would get it. It always made us smile because all the children would cheer him on and they would run around the room laughing.


Roma is in desperate need of a forever family. A very generous sponsor has given $110,000 in grant money to Reece's Rainbow and $10,000 is allocated for this darling little boy.

He ages out of the baby house very soon, and will be transferred to an institution. He is 4 already, and wants a mama and papa more than anything else. Could that be you?

He has the greatest smiles and is quite a rascal!

Saying goodbye to a special young woman

I read about this amazing young woman last year, I collect articles and stories about people with Down syndrome getting married, working, painting, singing, acting, all positive things I had shared with Meghan, Kara and all my friends.

Sadly Melissa Riggio passed away from leukemia Monday April 7, 2008. She was an advocate and an artist and an inspiration to many families. We are saddened to hear this news. We know Melissa rests in the arms of Jesus now.

http://kids.nationalgeographic.com/Stories/PeoplePlaces/Downsyndrome

The Ring
Words by Melissa Riggio
Music by Rachel Fuller

I'm in the Ring outside
I'm following my belief
I'm looking at the sky
I saw God following my heart

I'm an ordinary woman
The Ring is falling down my way
The wind is blowing me away
The Ring is falling down, down my way
The wind is blowing me away

And so I came back to
The center of the Ring
Am I just a broken angel?
God has sent me here to heal
To be an ordinary woman

Yes, getting there

Kara singling, Lalalala, off tune and loudly. LOL

We have DDD and Child Find appointments, DDD (Division of Developmental Disabilities) appointment is April 10th and Child find, who will evaluate Kara for the school district is on April 16th.

I am grateful they are both this month. Child Find asked me if Kara needed an interpreter, I am assuming her receptive English has been growing for months now, but I was taken aback, should we have someone asking her questions in Russian, or does she remember it? I know they lose their language very quickly, but how quickly? Any thoughts? At any rate she does not say any words yet, so she will not be speaking back to them.

Wow, Kara is really growing fast!

The girls in February, you can see that Kara is much larger now in the picture below, check out her chubby little arms. I think we need to cut back on her juices. She is drinking more water, thank goodness. You can see that Kara's head is now higher than the back of the bench! Her 18-24 month clothing is too tight, and she is moving into 3T's.

Just trying to get two girls to smile at the same time is a challenge, LOL, here is a sweet one of Kara, who does not like the bench is and is not happy to sit on it.

Meghan, excuse the messy hair, we were just outside to water plants, but I wanted to take a few pictures, we have not combed our hair yet...

The funny sisters, they do have more and more fun together. Meghan is also very protective of Kara and gets upset if mommy scolds her (usually for knocking over lamps and glasses full of milk :o()

Both Kara and Meghan forever have their hands in their mouths, when we were in Ukraine Roma (who is still looking for his forever family) also had his hands in his mouth often, they must need that feedback or stimulation? Any other moms notice this? Have any solutions to lessen this behavior?

Roma and Meghan in Ukraine