About me: I am the mom of 5 children all under 11 years old. My first four are biological and my last son came to us from Bulgaria. He is 15 days younger than his sister Alexi and both Avery and Alexi have OI or osteogenesis imperfecta. They are typical normal kids that just happen to have bones that are abnormal. It does not slow down Alexi at all.
Avery is learning to not let anything slow him down. He had more of a rough start due to his orphanage experience than his OI but at four he is now walking independently inside the house. Avery has a winning smile and a loveable personality. He has developmental delays due to his orphanage stay but is gaining ground weekly. He also was recently diagnosed with Fragile X but is making huge progress on a new anti-anxiety medicine. In the last 3 months he has made more than a 12 month developmental leap and except for expressive language and gross motor he is now at a 4 year old level. Outside and for distance he is practically running right now with a posterior walker and loves to swim, swing and ride his tricycle. He has learned to blow bubbles and paint and dance. You can see his story at http://averyboiko.tripod.com
Alexi is what I call my tasmanian devil. She has been running since 16 months and doesn't let anything slow her down. She got her first 2 wheel bike(with training wheels) last summer and now she wants inline skates. I have deffered this request to her orthopedic surgeon. She is advanced in her studies. She can identify her alphabet both lower and upper case and sign language and she can write all of the letters well. She is starting to sound out words in books. She can count to 20 and write the numbers as well. Both turned 4 at the end of June 2006/beginning of July. To see her story go to http://alexisoraya.tripod.com
Alec is my reader and just received an award for the most AR(accelerated reader) points ever read at his school. This was with him reading several books 3-4 times (for kicks no credit) and many many books that did not count. he is finishing 6th grade this year and is a Duke Tips Scholar. Alec has started a to write a book and it is really good. If he can just stay focused and finish it he will do great.
Aidan is my nature boy and just loves his toads. We are working on developing that love of reading but it is a hard road. He is a great illustrator and has a great imagination. Aidan has just made it to the distinguished list(all A's) and is loving 3rd grade.
Aubrey is my beauty and the best big sister. She is doing really well in school and is reading above her grade level. She is trying to learn cursive and loves to take photos. She is mama's biggest helper and keeps the house in order when I am sleeping. Aubrey is also a very demanding therapist to her brother.
We have a wonderful new member to our family this year. her name is Schirlla(sheila) and she is from Brazil. She is like family and she loves my kids , especially Avery. Many of the gains Avery has made are directly related to her devotion. I know that he is well cared for and active both mentally and physically when I am unavailable. We don't want her to leave in 1 year and will be trying to get her to stay.
Hi Mary, thanks for the words of encouragement. Dr. Fassier (who as you know created the Fassier-Duval rod), saw Hannah on 3 different occasions. He said it would be very extensive and require that they open EACH leg in 4 different areas. He added he had not performed rodding on many cases like ours. We may need to re-visit him once again as Hannah is, in my opinion, a lot stronger. Tks again. Love to the fam! Val :)
Hi Mary, good to hear from you (sent this in a private msg too:).
There are a couple of issues with putting rods in Hannah (mainly due to the severity of her OI and respiratory status). Her doctors and I are divided on that. I am considering an extension of her achilles tendon(s) that MIGHT help her to come to a more "flat footed" stand. It's VERY DIFFICULT as you may as well imagine. Hannah has a deep pectus excavatum and minimal lung reserve. She beams a BRIGHT SMILE but her body is very, very fragile in more ways than just the bone strength. You feel me???? Please keep her in your prayers. Love you guys. Val
Hey Mary, long time no write. Hoping all is well w/everyone. Han and I are doing well. PRAISE GOD! Each day brings its own risk but we press on not letting "things" stand in our way. Give our love to everyone and have a BLESSED EASTER day tomorrow.
the emily comment is a SPAM!! Sorry don't know how it got there. We are doing great besides Meghan fighting off a bad cold. We will have to get together sometime soon. Meghan loved being around you all and see loves talking to Alexi about High School Musical. ttyl, Kelly
hey mary.. do u remember i told u about one movie with the hippo and the dog?? so, i just found out some videos that are the sequence from the first one.. it's here the first and teh others.. enjoy.. hahaha http://br.youtube.com/watch?v=C9KOtplsnY8
hi Mary.... I really think u are working too much... hahahah well, I want ask your help... When u have time, please, can u help me to find a good hotel in disney???? I was checking some prices, but I don't know if is good. so if u can do this for me, would be great... thank u... and see u here, in home... bye
We loved watching Alexi's dancing videos. She can move can't she? My Alexia says she wants to dance like that also. On the exotic dancer, the little girl in the background was so funny being carried off kicking.
Hi Mary, Hannah has a birthday celebration this Saturday. Would of been great for your gang to come. Since its been raining, I hired indoor entertainment - hey, these kids of ours deserve every delight this earth has to offer. Just wanted to stop through and say, 'Heeeeyyyyyyyyyyyyyy...' Val and 7 year old Hannah:)
