We are still here

As our lives settle in to a routine and we are occupied with therapy visits and family life, I forget to post, or even come to Blogger. I suppose that is normal. Then I realised the last time I talked about Kara, she was not feeling well. She has been feeling good for a few weeks now, whoops.

Kara is now receiving speech therapy at home, I am hoping that the skills she is picking up will help her learn to communicate expressively, she does not do much of it. We know she is bright, so the huge speech delay is confusing. It also makes her act out, as she is frustrated that she cannot make her needs known.

She is a rascal, no doubt about it, into the terrible two stage with a vengeance and oh boy does she get into trouble. Her newest thing is to push her chair up to the counter and climb on it to get at the peanut butter. I caught her eating it with a huge spoon, peanut butter all over her hair and face. She will also eat butter, fruit, and anything she can get her hands on up there.

She is into hair pulling, pushing, and bullying Amanda, but for all that she is small; Amanda is no pushover, she lets Kara know she cannot be bullied. LOL

We have decided that neither Kara or Amanda will go to pre-school next year, it is too confusing to them, and there is no real need for it at this time. Bonding and learning to be part of a family is more important right now.

Kara is doing well despite some typical behavior issues. We did not expect her to be an angel, and she isn't. We do love her and she is a real and forever part of our family, and even after 1 1/2 years, we still cannot believe she is part of our family. We are so lucky!

Been a while

I realized I had not post to Kara's blog for a while, things have been busy and Kara is doing very well despite runny noses, rashes, and such. She and I are just having a rough spring, our entire family has been sick with flu's and strep. This too shall pass, I hope soon.

Kara was seen by a PT the end of March, FINALLY, after nearly a year of waiting for one to become available, The PT was an older woman, what we call old school (hey I am OLD too) and somewhat brusque though very professional. She believesKara will need weekly PT, and was surprised that she was not receiving it already. We are waiting for approval, not certain what is happening there, we have asked for a new SC, and are still waiting.

She had her IEP review last Monday; the IEP was uneventful with the exception of the PT and his attitude. I hear he is an amiable man, so it is me he does not like, how sad he made a judgement about me and found me lacking. :o(

I was not happy to be going because Kara has not been in school for two months, yes, you read it correctly, we have been so sick here that one illness is on the heels of another, and since Kara has a runny nose most of the time, they will not let her attend school. I truly believe Kara needs a tonsillectomy; none of my other kids has ever been a sickly as she. I want her to feel better, poor baby.

When I walked into the room for her IEP, I overheard the ST discussing Kara’s absences with the PT, a frown of disapproval on her usually contented face. They both looked sheepish when they saw me, I felt chagrined and it put me on the defensive, I took a deep breath and said a little prayer, this was for Kara, I needed to stay calm. Even when everyone on the IEP is amiable, it is rather stressful, but this one was not, the PT had issues with me for following doctor’s orders for Kara (against his advice). He also was very condescending explaining to me what the purpose ligaments and using scare tactics telling me Kara would be crippled if I did not heed what he was saying. At that point, I snapped at him for trying to scare me and overstating the risks. I trust her orthopedic doctor, and the PT who saw Kara last week for and evaluation did not believe the SMO’s were crucial at this point either. (I also asked the orthotistKara saw last week about her SMO's, they agreed, if the doctor feels she needs to walk without them FOR NOW, then that is what we should be doing) The PT inferred I was lying about the doctor telling me to put the SMO's away and to let Kara walk without shoes on. He quickly said “Not that I think you are lying….so he knew he had overstepped. He left before we were done, needing to attend another IEP. I was stewing about our conversation and needed to talk it through with DH Tom, I knew it would calm me down, and give a different perspective. I could not believe the PT thought I was lying about the SMO's, why in the world would I? It upsets me to think about it even now.

While we were wrapping up the IEP meeting, Tom called, the bike Eric made for him (bought all the pieces separately on EBay and in the bike shops in town) was stolen from his van while he was at work. It was a Quintana Roo, a very nice bike, and one he needed desperately, his old bike was a mess. Tom tries to ride to work when he can, it has been a challenge lately, but he kept the bike in his van because he thought it would be safe in there. Apparently anyone with a crowbar can break off the handle of our old Voyager and get in the van. It is an old van, insurance will not pay to fix the broken door, but our homeowners insurance should pay for a replacement of his bike. (minus the $250 deductible) that violation you feel when someone has broken in and taken something of yours, like a sucker punch, so cowardly. Even though the van was parked in the school parking lot, they will do nothing to compensate him for his loss; it is against their policy, period, it is not the first thing that has been stolen from him the 18 years he has been a teacher. I am grateful he was nowhere near when they broke in; I believe that someone who is heedless of the risk of discovery enough to steal something in the middle of the day would not hesitate to hurt my husband. He feels pretty badly that the gift our son made for him was taken though, I think that bothers him the most. Our homeowners insurance will cover most of the loss, thank goodness.

Kara was evaluated by a speech therapist for in home ST Monday morning and it was determined (not surprisingly) that she will need weekly speech in addition to what the school provides (not that she has been in preschool, she is not allowed with a runny nose...rules are rules). I am so excited about the speech therapy as she is not communicating verbally at all. I believe having to unlearn Russian-Ukrainian and learn English has made it very hard for her. She has a few signs, but poor sweetie needs something more.

Please help Amy bring Elijah home

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From another blog:

From Amy (Elijah's Mom): "I am a single mom, with three sons. Two of my children have Ds. My oldest son inspired me to become a Special education teacher and eventually also inspired me to adopt. I adopted Caleb who also has Ds in 2005. Now I am adopting Elijah. I started this adoption a year ago in January. I began adopting from the Ukraine and the day I mailed my dossier to Ukraine was the same day their president signed into law that singles could no longer adopt. That was in April 2008. Then in June I began another adoption from Eastern Europe. I was blessed to finally meet Elijah in October. It has been a long 5 months waiting to go back. He's beautiful, a little hidden angel just waiting....The boys and I can't wait to have him join our family!

Then about 2 weeks ago, my basement flooded and my insurance only covered the clean up. There are repairs that need to be done that have been estimated between $3500-$4800. This happened about a week after I got my court date. So that is how I ended up needing additional funds.:( Any donation, no matter how small would be greatly appreciated. I want to thank everyone for their prayers also. I am very blessed."

From Jody's blog: "Our friend from Reece's Rainbow~ Amy is leaving this week for her second trip to go pick up her son. Elijah just happens to have down syndrome like two of her boys already at home, she also has an older son so that will make 4 boys for this sweet lady. Amy has done these adoptions as a single mom. If that is not hard enough. She has had some major expenses come up. Amy can use all our help,she needs to raise 3,500.00 dollars very quickly to bring home her little boy.

We all can help, maybe you can't adopt a child but would like to donate to help a child come home. Amy is a very sweet lady with a very big heart. Please help her bring her little boy home....." "Lets parter with Amy to bring Elijah home ... Thank you all very much!!!

Even a few dollars goes a long way , to bring home these sweet children..."

You can donate using the chip in below. Please also grab the button at the top of this post and help spread the word.



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Today was World Down Syndrome Day

I went from blog to blog and read what was in their hearts today. I made me think of being in Ukraine the day Meghan left with Tom, the relief I felt because Meghan made Y nervous, and how happy I was Meghan would not have to feel that rejection anymore. As more time goes by I find I am hurt by the dismissal of my beloved daughter, and for whatever reason there is, I can feel it more now than I did then, perhaps because at the time, I was just trying to prevent any negativity in my thoughts from being known, scared that I was so far from home and no one would be able to help me if anything went wrong, that feeling of helplessness wore me down. So there I go off on a tangent again...back to my topic, I feel so badly that there are so many people who do not see the child in the little ones with Down syndrome. All they see is trisomy 21, and nothing else.

I still dream about Ukraine, in one of my better dreams I can actually talk to people and hear their thoughts about Down syndrome. I can tell them how much I love my daughters and how valuable they are to me and to society. In these very good dreams, people listen and they embrace ALL children, and give them the tender loving care they crave.

Ukraine does have a budding Down Syndrome Society, I pray it will grow and change perceptions there. I fervently hope they never embrace western ideas of abortion of "defective" fetuses and they allow all their precious children to be born, while I am saddened by the children left in orphanages, I am happy that they had a chance to be born. I am hoping more and more families will decide to keep their children with them, and I pray more will travel to Ukraine to adopt those that do not have those families.

Kara today, she is getting over another cold, bronchial issues are nothing new to her, poor sweetie. She is feeling better, but her nose is always runny!

In my minds eye I can imagine people with Down syndrome walking to the Metro, or shopping at the mall, or walking among the many tourists at Independence Square. I can picture their faces beaming with acceptance and happiness as they greet the hoards of people with a smile. I remember walking along those streets too, the people so dour to my American eyes and how I wished and prayed for a friendly face, even a nod of greeting, anything those 3 long weeks I spent without my family. The few smiles I did get were a gift. I think by the time I went home, I looked pretty unhappy myself. :o(

I know change is never easy, I know that long held beliefs are hard to let go of, sometimes there even though we do not know why we have them. Still, my wish at the end of World Down Syndrome Day is for all people born with Down syndrome to be cherished members of their countries, here and abroad.

Please, can you help translate a letter?

I promised Kara's orphanage I would send them updates about her progress, and I need someone to translate the letter I wrote to them. Does anyone know someone who can translate my letter to Russian? I thought I had someone, but have not heard back from them, and I am giving up. I want to get the letter to them as soon as I can.

Dermatologist concurs, it is Fifth Disease

She said it was absolutely not strep or an allergic reaction. It is fading, so she said in a week or so, Kara should be fine. At least we got an answer, and I am relieved it was not strep.

I wonder if it an an allergic reaction to antibiotics?

Kara today, the rash is fading.

Thank you all for your comments, I have been scouring the web (it being a weekend, the doctors offices are not open) and I have seen similar rashes on kids who had allergic reactions to Amoxicillin, which Kara was on.



I found this blog:


http://www.homeschoolblogger.com/lauramb/59912/ and it appears that many rashes are a mystery to folks, weird that so many look the same yet everyone had something else.


And here is a good picture of the rash: Amoxicillin rash

I read there were two types of rash associated with Amoxicillin, one that is a drug reaction but not an allergic response, the other is an allergic reaction, with itching and hives. I had a rash from it after Julia was born, they took me off and put me on Sulfa antibiotics, and I broke out in hives that lasted 3 weeks. No fun.

Fifth disease?

So I was doing my Saturday reading and read about Kennedy's rash (Special K's)and went on to read about fifth disease, hmmm, sure sounds like this is close to Kara's rash, click on her picture to enlarge, what do you think moms?

Kara is feeling much better!

Kara sure does look Ukrainian, doesn't she, we thought the women in Ukraine were stunningly beautiful, and she is no exception. Yea, we are proud parents, wouldn't you be?

She has not been outside for over a week, at least not for a long time, she was playing, walking around, laughing and so happy, oh thank goodness for that, and thank you for your prayers, they are being answered!

I love Kara's pudgy little toes, she does have webbed toes, the second and third are webbed halfway up, and the third and fourth are 1/3 of the way up. I love her feet because of this, they are special, different, and part of what makes Kara Kara. You can see she also has a large space between her great toe and the second one. I kiss her little feet all the time, she thinks it is the greatest fun and giggles. Amanda's hand and foot wanted in the picture too!

There are more pictures of Kara on Meghan's Blog

Poor Kara is relapsing

Kara is feeling poorly again. I do not understand why her antibiotics did not work, but her throat seems even sorer than it did before, probably because she has a virus and not strep like Meghan. They never tested her for it; they just assumed it was strep because Meghan had it. The CNP said if it was a virus, no medicine would work against it...I knew that of course, but now I am faced with an utterly miserable daughter who refuses to eat anything but popsicles and yogurt. At least she ate that.

I dislike the helpless feelings I have when my children are ill, that apprehension that sits in the pit of your stomach when they are ill wears you down. I have been praying she will be well soon, she had two good days; I thought she was on the mend. Meghan who did have strep is getting better every day, though she is still sleeping an awful lot.

We would appreciate prayers for Kara and Meghan recovery from this flu.