Two post in a day!!!

Shocked? No more than me! I am taking a break from life while the kids nap and getting caught up on the blog buttons. Feel honored? No? Well... you don't fully understand what my day has been like! I needed this nap time! :) Anyway... I've added a couple of buttons. The RR 2010 Redemption Calendar is available for download. Wonderful calendar as it celebrates some of the children from RR who have come home! (hint, hint... check out December). Also, the RR Christmas Angel Tree Project will be kicking off soon! Be sure to check out the RR site to find your Christmas Angel! Please pray for this project's success as this is the main fundraiser for these children's individual adoption accounts and prayers that many angels will find their forever families through this campaign. You may not know this, but we found our two angels through the 2008 Christmas Angel Tree!

I need to update some celebrations! Congrats to the following families that have brought their children home!

The Baker family


Grab This Button

The Lisciandro family



Visit our Blog

Hanging in there...

Having one of those weeks. The kids have made a secret pact, I'm sure. They are tag teaming me and wearing me down. They have worked out a schedule or something. I haven't figured out the pattern yet or the mastermind behind this evil plan, but they are definitely up to something. All day, every day someone is pushing my buttons. When I finally get one unruly child under 'control' (yeah, right!) another child takes over doing things they know darn well they should not be doing. It is only 9:30 in the morning and we have already had 12+ hitting each other, my basket of toys is growing fast (the toys that become mine because the kids fight over instead of sharing), we have been separated, done time outs... they continue. We are home today. I had toyed with the idea of going out for a bit, but their behavior has nixed that thought! My laptop is still dead and I finally have told the manufactured I'm done with the over the phone attempts to repair so they are sending a box to mail it in. Hopefully, I'll be back up to speed in a few weeks. Luckily Abby hasn't tried to repair it. We caught her last night 'fixing' her computer. She had taken some of the keys off and Tim asked her why she had broken it. She said she was fixing it, "they were in the wrong order... B is supposed to be by A". This would be an example of someone being "too smart for their own good!"

This week we have managed to get Anastasia's cavities filled, therapy for both Sophia and Anastasia, normal school/preschool drop off/pick up, and squeezed in haircuts for Shelby, Sophia and Anastasia. We had Anastasia's new lense put in her glasses and both girls' glasses adjusted again. Miracle League game tonight, Buddy Walk is Saturday. We have an appointment Monday at Children's for Sophia and Anastasia to see an Orthopedic specialist. Hoping to see if there is an issue with Anastasia's legs and see if either/both need any braces or inserts to help them with stability. We will have covered all of the medical concerns at that point and have began all of their therapies. We still have an upcoming visit with the Down Syndrome Clinic, but that is serving as a 'second opinion' visit more than anything else. They will have their hearing tested, but everything else will re-checks.

My dad asked how things were going the other day. I replied, "Every girl dreams of being a princess, but I never dreamed of Cinderella's early years!" Looking forward to catching my breath... hopefully soon! :)

Week in review...

Wrapping up another busy week... Shelby's school schedule, Abby and Romney's preschool schedule, follow up eye exams for Sophia and Anastasia, doctor appt for Shelby, therapy schedule has began for Sophia and Anastasia, and a last minute trip in for everyone to get their annual flu shots. The girls continue to do better and better each week. We are still working on introducing sign language and they are doing rather well. Anastasia has a harder time with the signs since her fine/gross motor skills are not very good, but she is comprehending very well. They get excited watching the Signing Time videos. That is the only tv they watch so far. Playing is getting better and better. Sophia is doing much better with going outside and her little fits/pouts are fewer and fewer. We still have jealousy and some bullying towards Anastasia, but doing better. Anastasia seems to be embracing her new life. She has some crying episodes, but they are more typical behaviors... someone snatched something, she didn't get her way, she thought she was in trouble, she was in trouble, etc... The one thing we are starting to work on with her is being separated from Sophia. We noticed that when Sophia was called away Anastasia would try to follow or she would cry to be left behind. Even if the other kids were all there with her. We do not want her to become 'dependent' on Sophia's presence. Sophia has a tendency to follow Anastasia at times as well, but for different reasons... she is making sure Anastasia is not getting something she wants! Considering they have had a family for less than 2 months... we think they are doing wonderful! Our Buddy Walk is next Saturday... looking forward to celebrating with all three of our buddies this year! :)

Updating...

I have been remiss in my duties. More families have come home that I have celebrated, but failed to update the blog with the info! Here we go....

Welcome home to the Tubbs family:


Visit our Blog

and to the Sousa-Brown family:

Grab This Button

and to the Hyman family:

Grab This Button

The Evans family:
Click here to help us





The Layne family:

Visit Our blog



Isn't it great to see so many kids coming HOME! :)

Also... I wanted to add a little to my last post. I don't want to give the impression that all of the caretakers at this orphanage do not care for the kids. We never witnessed any behavior that was below board and felt there were some that truly did care. We honestly have no way of knowing who spoke ugly to Sophia. Most likley, this was a childish taunt repeated by her peers. Our thoughts are that these children are all confined to the orphanage and have been their entire lives (most likley) so... where would they learn such a taunt? It stands to reason the use of the taunt by one or more adults for the children to have been exposed. I would like to continue to believe that some of the caregivers were not this way and truly did care for these children. Their behavior the day they picked out the supplies for the children implies they did care. The country's culture overall does not embrace individuals with Down Syndrome, so it is not overly shocking that this 'society norm' would carryover into the belief system of the orphanage staff... at least to some of the individuals. We can only hope that the more children with DS that find families, the more we leave them scratching their heads wondering "what do they see in these children?", "why would they pick that child when all of these 'good' children are here?". Hopefully in time we can help shatter that cultural standard in regards to individuals with DS. I did want to share something that I thought about... to do this I have to tell you the word, or at least Sophia's pronunciation of it (we were told she does not say it correctly). The word she uses sounds like "Doo-yah". I find great pleasure in knowing that I had started changing this for her prior to us discovering this word had meaning. When she would say "Doo-yah" I had started to reply by singing "Do ya love me?..., Do ya love me?... now that I can dance". (I'm not sure the words are right and I can guarantee you the melody was way off!) She seemed to like it. I just found that kind of funny, but then... I'm not sleeping much these days! :)

The ugly reality

Today we had the girls' speech and psychologist evaluations for services. We will have the IEP on Friday to establish what services, etc... they will begin to receive.

They had a translator at the appointment. A missionary from Ukraine that does work in Ukraine Orphanages (not the girls' region). Courtney was talking with her while I was with the psychologist doing testing. She asked her if certain things translated to Russian that Sophia says or if they were just childish gibbering. Well... one of the things turned out to have a meaning. We had asked while in Ukraine visiting the orphanage about this word's meaning. We were told it must have been something she just made up. We had asked on Friday after having only visited with her 4 times. We asked because this word was prominent in her vocabulary (she only repeatively uses a few words). This implies this word was one she was very familiar with. Again.. when we asked before we were told it was nothing. Today we find out this word does have a meaning. She does not seem to understand the meaning nor use it accurately. She does not pronounce it clearly, but it does have a meaning. It means "Fool". This lets us know that she heard this word repeatedly and that the word was specifically directed at her. She thinks it is a little game or something. She says it in a sing-song voice then laughs, repeats, etc... I have been teary-eyed over and over this morning invisioning her 'playing' along as children and adults have used this word to insult her and she didn't even understand. How funny that must have been to them. How sad. That is the ugly reality. They have no understanding of children with Down Sydrome and what beautiful blessings they are. How can they not see these children are God's gentle and innocent creations? How can anyone not see? As for our house... that word is going to be erased from a certain little memory bank. Even though she may not understand what those people were saying, I felt a strong urge to start undoing what they had tried to do. I took her little face in my hands, gave kisses, looked her in the eye and said "Sophia is no 'fool' (insert her version of Russian translation)"; "Sophia is beautiful"; "Sophia is smart"; "Mom loves Sophia". She does not understand my words or their meaning either, but in time... she will.

Shhhh! They are sleeping!

I got the girls down for a nap so I have a few stolen moments for a quick post! Still working off the old computer so this will be short! Lu is working on a project for RR that required some photos of Sophia and Anastasia. After many, many, many (Get the idea? We could have our own "Bloopers" show) many attempts, I think I may have finally gotten one for her. I think it is cute anyway. I know... both aren't looking at the camera, but you didn't see all of the other photos! :) Anyway. Since I have this new pic (taken today) and I have request for new photos periodically....


Update: it is 2 1/2 hours later. Our power went out mid-post. Thank goodness for auto save or this would be another post that never happened. Anyway... the point of this update is to ask: Have you ever experienced a power outage with a person with Down Syndrome? I am curious if your experiences are like ours. Today I warned Shelby (15) on the way home from school that the power was out when we left the house. She groaned and moaned the entire way home. So I'm thinking well... at least she was forwarned. Ha! She came in and took inventory of EVERYTHING that did not work. Groaning and moaning with each new discovery. "My alarm clock! My dvd player! My tv! The microwave! This too (fridge)! and this (freezer)! I kept telling her NOTHING works, EVERTHING is out of power. After running low on light switches and electronics she stomps off to her room and proclaims before going in "Thanks (insert sarcasm), MOM, for the warning!" I reminded her that I had indeed told her that the power was out at the house. She responds, "but not MY room!" :)

Still here... sort of

Well... again. Sorry for the delay in post. My laptop is currently not working which has cost me an entire day this week on the phone with tech support (while trying to keep up with the kids). I am having to go back to old reliable which was replaced because it was old and slow (and we really wanted to have a means of communication while in Ukraine). I have been trying to get things done this week, but it takes so long that I have not been very productive. Still hoping the laptop can be saved since it is better and it has all my photos from Ukraine! I'm just now finding enough time to attempt to post here.

Now that I've given my excuses... we are doing ok this week. I want to brag a bit on the girls. Both have taken steps forward in potty re-training. Both have indicated that they need to go, Sophia took herself once and Anastasia has stayed dry some in between (Sophia is normally dry, but she doesn't request to go on her own or stay dry consistantly during naps/nighttime). For now, we still buy bulk pullups! However, progress is being made! Sophia also has been playing much better this week. We even had an outside playtime that she did not do her normal sulking thing, but played the entire time instead. We have had a few incidents with the glasses though. Both have taken each others off (being ugly) and both have had to be repaired (Anastasia's twice now). They go back at the end of the month for recheck on eyes to see if this is the right prescription. We will then purchase the lenses for Anastasia's second pair. That will save us a little on trips to have glasses repaired. If I haven't already mentioned this... Specs 4 Us is where we found all of their glasses... Sophia, Anastasia and Shelby (Shelby doesn't wear hers yet... eye appt is in October). They make frames for children with DS. Typical frames do not fit their features very well. This company receives a very strong recommendation from me. They have been absolutely wonderful to work with. www.specs4us.com. If you check them out.... tell Maria we sent you. No benefits to us at all. I just want her to know we are very appreciative and singing her praises! :)

We have not had much going on this week other than the normal school/preschool schedule. Next week is the speech eval and psychologist eval before the IEP on Friday. I'm ready to get those checked off so they can begin therapies. Anastasia has the most to gain since she has the biggest delays as of right now. The girls have an appointment scheduled with the Down Syndrome Clinic in November. I'm hoping they will serve as a 'second opinion' on everything to date. A little reassurance. They will also check their hearing.. not just the screening.

Miracle League has started Fall Ball... sort of. We have been rained out all 3 games. Only Shelby is signed up. Too soon for Sophia and Anastasia. Who knows.... maybe Spring. Buddy Walk is around the corner. Our walk is on October 10th. Looking forward to it! We will have 3 buddies to celebrate this year! Normally we fundraise/walk for Shelby's Team. This year we will have to update to include all 3 girls. Team Haire? I know... original. It doesn't matter much though... only that the $$$$ raised goes to benefit Down Syndrome Awareness. Is there a walk near you? If so... check it out!

One of those days...

I was off to a good start today. Up earlier than normal, shower, dressed, lunches packed x 3, clothes ironed x 5, chocolate milks x 3, cereal bowls waiting x 4, medicine distributed x 3, shopping list prepared... I'm thinking this is going to be a good day. Then it starts. Shelby will NOT get out of bed. After many trips back and forth dealing with her and everything else, she finally drags her lazy tail out of bed and starts to get ready for school with a total of 30 minutes to perform this miracle. With the time I have spent jump starting her, I was unable to get the others beyond breakfast. With one tearful Shelby and one frustrated mom, we pack up four little ones minus shoes and still in pjs and off to drop Shelby at school. Not to be defeated at this point in my day (it is only 7:30!) we head back home where we split up. Those that haven't finished breakfast are back at the table as I begin to dress the others. Now, with shopping list in hand we pack up four little ones all fed and dressed for the day. Drop two at preschool by 8:30 and off we head to pick up the life sustaining supplies (ie... coffee, hot cocoa mix and a list of other things). We run into Shelby's class there on their first 'community experience' field trip so we are able to verify that she has shaken her mood and all is well in her world again. We finish our shopping and head home still feeling rather victorious. With less than an hour to spare before preschool pickup time, we do a quick snack and play time while I'm putting everything away. Off to pick up other two. Home for lunch and then I spend the rest of my day with 3 mule headed little girls refusing to take a nap. Romney goes down so at least it is 1:3. Now enough time has passed and there is NO time for nap, so we wake up Romney. Then we pack up him and three little girls (who are now wanting to sleep in the car) off to wait for Shelby - 1:5. Back home to put three girls to bed and Romney to be reunited with mom... 1:4. Shelby is not thrilled with her 'punishment' over this mornings behavior (no tv and early bedtime so we don't feel the need to sleep in) and three little girls still don't want to nap, but they SO need a nap. Finally... success. Shelby has accepted her fate, three sleeping 'angels' and one mom that feels like this....



And now it is time for Tim to come home. For his sake, I hope he doesn't comment on the house or ask what is for supper!

Prayer needed for this little one...

I am broken hearted to find out that the family that was trying to adopt little Svetlana from the girls' orphanage has been denied by the 'powers that be' for various reasons that seem crazy when you consider the alternative - she will have NO FAMILY! The family will be able to adopt, but they will not be allowed to adopt this child due to her age and disability. We had the opportunity to meet Svetlana on many occasions while visiting our girls. She was in Anastasia's group. I would greatly appreciate if you would join me in praying for the Clark family as they have to accept the decision of others and look for God's guidance in which child they are to bring home to their family. I request your vigilant prayers for Svetlana. She is in need of a family to bring her home. She has been held at the baby house longer than normal and will be transferred soon. She is a beautiful little girl and she would be a wonderful daughter for a loving, caring family. Her information from RR website:

Svetlana



Girl, Born December 25, 2003

Arthrogryposis

SIGNIFICANT RISK, PLEASE ADOPT ME SOON!!

Can't beat the glowing smile on this Christmas angel! Svetlana is almost 6 years old, and is still waiting for a family to call her own. She has beautiful brown hair and blue eyes. Sveta was born with arthrogryposis, but as you can see, it isn't slowing her down much. She is able to walk on her own and is very able. Her hands do not seem to be affected very much, if at all. Photos of her feet and legs available. Let's bring this munchkin home, so she never has to spend another Christmas Day, or her birthday, without a mommy of her own!
Our own facilitator loves this girl dearly, and has had her to visit with his family several times at their home. He tells us she is SO smart, and everyt ime he visits the orphanage, she is always standing by the door looking for "mama and papa". He longs for a family for this child. He even took it upon himself to arrange and pay for the first in a set of surgeries for her. She had her first hip surgery on September 10, 2009.

Catching up...

I am just going to have to confess that I am not SuperMom as shocking as that may be (yeah, right!). I have not figured out how to get it all done in a day. Hence... I am catching up on the blog! Sorry! I imagine I will forever be apologizing for delay in posting now that we are home. The adult child ratio has flipped and I'm in survival mode most of the time. I imagine things will improve over time (I really think this... not just lying to myself for encouragement). As the girls adjust, learn to communicate and self help skills improve things will slow down a bit. Both girls were "potty trained" per our reports, but we have found that not to be the case or at least they have regressed with the 'life change'. We are focusing on Sophia right now as we think she will be the first to get back on track. Anastasia will take a little work and requires constant attention during bathroom time. She will not stay seated and also enjoys unrolling the toilet paper. So... by the time we go through a 'potty cycle' with all of the girls (and Romney on days Courtney is in school) it is just about time to start over again. Yes, I know, I live a glamorous life. For any of you battling "holding" issues with your little ones let me strongly suggest FiberPlus bars (or FiberOne) and Miralax. I swear, I think God sent those as answers to my prayers after years of battling with Shelby (during years of chemo she developed major panic/holding issues). With Sophia and Anastasia I'm just giving them 1/2 bar each daily and it helps. When this fails.... Miralax. If you've dealt with this in children, you understand! If not, you are wondering why in the heck I'm talking about this! On to something else...

The girls' dental appointments went fairly well on Thursday... considering. Sophia did great and no problems. Anastasia? Well... not as bad as we feared. If you remember back she is the one who totaly freaked out over us brushing her teeth. We have worked up to covering the whole mouth now so she wasn't as bad as I had originally worried (I had discussed using the gas for her cleaning!) She did cry a good portion, but no restraint was required as I had feared. They did have to use the clamp to keep her mouth open. Due to the poor dental hygeine till now, her gums bled something terrible the entire time. The orange around her gum line was plaque build up and they were able to remove it all so she has white teeth for the first time in goodness knows when. She only had 2 cavities which was surprising actually. Dreading that appointment though! Gas will be used so hopefully things will go well! She did fine at the bedtime brushing on the same day so I'm guessing no therapy will be required to get over the experience! (for her anyway!... the staff are on their own!).

PT and OT evals were Friday. Both will receive OT, but only Anastasia will receive PT. Sophia tested "does not qualify" for school provided services. We will have this reevaluated once she is entering a school environment, but for now... we don't have much to stand on (unless we notice something regarding her abilities). The preschool situation that I had mentioned before for the girls will not be taking place anytime soon. The state has delayed the program with no start date given at this time. I was really starting to find a lot of positives to them going 3 mornings a week. I was hoping to have some 1-on-1 time with Abby some during this time to help her with the adjustment. She is starting to shows signs of the changes bothering her. She has cried the last 2 times she was dropped off at preschool and has been a little teary around here as well. She is only four so it is to be expected, but I'm hoping we can reassure her that life will be just fine with the girls here. She is having to share a lot... especially mom and dad. Hopefully, the school system will work out the kinks because I think preschool schedule would be helpful on many levels for us!

To back up a bit... Wednesday we had our annual trip to Birmingham for Shelby's oncology appointment. We have been going to the clinic for 10 years now. The last 5 years have been the annual check up or "Shelby beat Leukemia" appointment. So thankful we get to celebrate that milestone each year.

Not much else to update unless laundry, dirty dishes etc.. interest you. I will leave you with a couple of pics since Tami specifically requested.... :) Just a couple of nap time today and one from the other day...

Anastasia found another use for the straw purse. She cracked me up... how would you react if you turned around and found this growling at you? Tim told me I shouldn't show anyone this photo, but I think it is too cute!

Settling in...

Sorry for the gap between post. Life is a little busy these days! We have just been hanging around the house getting used to our new life. Anastasia seems to be settling in more and more each day. She is really coming out of her little shell. She had been more outgoing at the orphanage the first visit or two, but once the little crying episodes for her group began she had taken on a more subdued personality. She has really started to open back up this last week. Sophia has been playing a lot more this week. We still have times (daily) when she does her little sulking thing and refuses to participate, but at least there are more and more times when she will join in the playing. There are many things that took no time at all for adjustment.... they fully embraced ice cream cones and hot cocoa (our 'night cap'). Actually, they will eat anything that is put in front of them. I am thinking that Sophia does not like sweet peas though. She eats them last and they take longer than anything else. She also has this look on her face. She has only had them three times though. May be texture issues. I plan to serve them, but maybe smaller amounts to see if she will get used to them or if it is truly a dislike. Abby has started eating more and faster, this is a good thing. She doesn't eat with the speed the girls use, but she gets it done. We are still working on the girls shoveling their meals down too fast. We aren't so worried about the manners just yet, but choking is a concern with their eating habits. I'm cutting their food up which wouldn't be necessary if they would slow down long enough to chew!

It is still amazing to see their excitement over the things we take for granted. I've been showering the 3 little ones together the last few nights.... they have a blast. A ride in the buggy at Walmart has Sophia so excited she looks like she might bust! They have really enjoyed the $1 bouncy balls and running through the house laughing together has helped start turning these three little girls into sisters. Shelby is brought into the fray by their infectious laughter. We were woken up yesterday to the sounds of laughter. After a few minutes, Tim got up to peek in and see what was going on. He found Shelby had woken up and joined the other 3 in the bed. She had the little ones laughing!

This next week will be another busy one. Tuesday no one has school so we will all be home. Wednesday we have Shelby's annual appointment with her oncologist, Thursday is dentist for Sophia and Anastasia (we are doing better with brushing so hopefully they will be able to do a good cleaning/exam) and Friday is the PT and OT evaluations for Sophia and Anastasia. Of course you have to insert the school schedule for everyone else as well. We are getting it figured out. The speech therapist will evaluate later on since they are trying to get a translator for that visit. She has also told us about a new program that is starting soon. A special needs preschool program. It will be 3 mornings a week. They would be able to work with a special ed teacher and therapist on sight. We are seriously considering it. It would be a definite, but we want to make sure they are doing well at home before we immerse them in other environments. Well... better wrap it up. Anastasia has joined me so I'm having to edit more now than I get to type! :)

More kids have made it home!!!!

More of the Reece's Rainbow families have made it HOME with their children and buttons their buttons are coming down! Welcome home to the following families:

The Taborn Family

The Wells Family

Just a quick note!

I just had to jump out here and share.... we just witnessed about 30 minutes of joyous and fully involved playing by Sophia! I had given Sophia and Abby their showers first and they started playing with the bouncy balls. They would throw and chase them. This led into running up and down the hall laughing. After Anastasia was bathed and dressed we coaxed her into joining in on the fun. We had three little girls giggling and running back and forth from kitchen to bedroom. The giggles were so loud they brought Shelby out of her bedroom. She cheered them on for a lap or two then joined in the fun for the final lap! Yes.... four girls giggling and running through the house! What an entertaining night! :) Tim, Courtney and I laughed right along with them they were having so much fun. It is the little things! It was wonderful seeing Sophia letting herself have a good time and then to have Anastasia join in as well!

Medical Updates!

We have received the labs back and everything is looking good. Both girls had positive TB Skin test, which was not a surprise since they had both received the BCG vaccine. Their chest x-rays have come back clear so again... looks good. Sophia is currently on an antibiotic for possible Pneumonia (she is not sick at all, but the Radiologist commented on it in the chest x-rays so the pediatrician gave her an antibiotic). The cardiologist appointment was today. The cardiologist said Anastasia is FINE. Sophia's report is better than expected. The cardiologist did not find Pulmonary Hypertension. He also found that the AV Canal was only a "partial" since she had a tissue that had formed a small patch which protected her heart from further damage. She will continue on her meds since it will only help reduce the backflow, but he debated stopping them altogether. She will go back in 6 months and be scheduled for catheter to verify the doctors findings are correct prior to scheduling surgery. He said the surgery could be a year or 2 from now if needed. We will see how she is adjusting and he is hoping she will be better able to communicate then as well. Ideally, it would be done prior to her starting school, but under the circumstances... he is willing to wait. We were very encouraged by the doctors findings and thankful that both girls appointment went fairly well (considering). Thank you all for your prayers! :) Oh... we also have our new glasses! I will get better photos later, but for now...

Small steps...

I am celebrating this morning that Sophia has occupied herself for 15 minutes or more! That may not seem like much, but to me that is huge! Why? Because we have been struggling to get her to play at all! We understand that their experience with "playing" may not be the same, but that doesn't seem to be what is going on with her. Anastasia will entertain herself and play (not as much as the others, but some). She will pick out toys and carry them around "playing" (while following me around). Sophia... not so much. I have taken her to the toys, taken the toys to her, etc... She shows little interest and will leave them or put them away and continue to follow me or just sit or lay around. It seems at times that she determined not to play. For example... while in this 'mood', we have noticed her dancing along to Anastasia's music or smiling at something one of the others is playing with, but when she sees us watching she quickly stops and sits again. It's like she is refusing to have a good time (or let us see it anyway). When she finally forgets her 'plan' she will play and enjoy herself. So for today to start out with her playing... is a great start to the day! Yes, it ended quickly enough, but it is a ray of hope! :)

Tomorrow Sophia and Anastasia have their cardiologist appointments. Prayers that all goes well for both girls.