|
Avery arrived in the US and the first couple hours with his siblings were quite overwelming for him. All his siblings
knew and loved him from the start but they are a rowdy bunch and really affectionate and that was scary for our little man.
He was quickly bounded to his mommy but took some time to attach to his dad. He arrived with a weight of 22 lbs
and height of 29 inches. He had no speech and didn't know how to cry. He resisted being held but then tried
to get you to hold him only to then push you away. He immediately loved his crib and his pool and the outdoors in general.
He loved going for walks. He could only eat food the consitency of yogurt and had to have things pureed and blended
into puddings and yogurt.......boy did we get sick of the smell of yogurt. He couldn't drink thin liquids and to drink
apple juice you had to put apple sauce in it. he would choke and gag on it. He wouldn't even drink regular
milk because he had probably never had that.
In mid-May 2005 Avery got to spend his first long weekend at the beach with friends and family. It was the last
weekend before his surgery and we wanted him to see the ocean for the first time. He actually did pretty well with the
sand but the waves were a little scary for him. He enjoyed playing in little pools of water and he always loves the
walks bith on the beach and to the ice cream parlor. He got to meet Meghan G and family for the first time and
she gave him his first kiss..............watch out ladies.
On May 19th 2005 he had his first orthopedic surgery at Omaha Children's Hospital . He had his right femur and
tibia rodded with telescoping rods but due to complications in surgery(blood loss and bone shattering) they could not do the
left side so he was put in a spica brace and the plan was to do the left femur in September. His stay
was complicated by poor pain control and inappropriate medication doses. His longterm recovery was harder than
his sister's due to the bone shattering and he had to regrow a portion of his femur but he was a trooper throughout and
almost always had a smile for you. It appeared he was just so happy that he did not get put in a crib to recooperate.
In late May the Suri Family went to Annapolis Maryland to meet up with several otehr OI families for a get together.
We spent 4 days at a nice hotel with an indoor pool. The lifeguards were from BULGARIA...........what a small world.
Avery got to swim several times in his splint. He so enjoys the water and his mom will do anything to try to keep him
strong.
On June 2nd 2005 Avery had his adenoids removed and ear tubes placed. During his previous surgery he was noted
to have obstructive adenoids and he failed his hearing tests due to presumed chronic ear infections. 2 days after
surgery we could tell that he was hearing great. He had no further problems with breathing and he went several months
without any form of respiratory infection.
Avery started the Early Intervention processing 5 days after coming into the country. We knew in January(during our first
visit) that he had global developmental delays. He qualified for speech,physical and occupational services
and those therapies started in our home in June 2005 after his 2nd surgery.
Three of his siblings had birthdays in June and there were many pool parties to be had. Grandma and Uncle Bobby
came to visit with cousin Zack. Uncle Bruce, Aunt Kim and Bryan, Carolyn and Katelyn got to meet Avery for the first
time as well. Avery is now part of a big boistorous family and will learn that he is loved by all.
Avery's third vacation was to Orlando Florida the last week of June 2005. We stayed at a very nice family
resort with great pools and he got a lot of swimming in to help rehab that poor little leg. We spent a week there and
went to Universal and Islands of Adventure. Avery had such a good time and didn't seem afraid or alarmed at all the
noise and characters. He had lots of sensory activities and seemed to thrive and grow during this week. His favorite
ride was ET with Storm Force being a close second.
July 15th 2005...............Avery is 3. His first birthday was celebrated with a small family gathering.
He had a fish cake and some balloons and 4 silly siblings laughing and hugging on him. He swam in the pool and enjoyed
some swinging too.
On July 19th 2005 Avery had his third surgery at UNC Chapel Hill. He had a hernia surgery as well as a circumscion
done. The pain from the circ was dramatic and for a little boy that needed little pain meds the day after a femur fracture
it was something to see his pain med requirement after this surgery. His surgical experience was better than his first
experience at Omaha Children's but definately not as good as his experience for ENT surgery at First Health Moore Regional
in Pinehurst, NC. During this surgery tissue was sent off for a biopsy for OI just to satisfy mom's crazy curiosity.
This was later to come back negative but the skin biopsy has at least a 15% false negative rate and Avery is definately clinically
OI.
On August 21st Avery started his first formalized school in the US. He goes from 830 am until 230pm and has his
own one on one aide. He gets 1 hour of speech therapy, physical therapy and occupational therapy per week. His
whole day incorporates goals set by the therapist and he is an a heavily sensory oriented classroom. He has circle time,
plays outside and is learning how to play with toys and other children. He is learning to feed himself. He gets
daily therapy for SID(Sensory Integration Disorder) which he developed due to lack of movement and touch in the orphanage.
He is learning to play with paints and sand and loves playing in water. Music time is his favorite and he loves snack
time. Mom was able to come for the first 4 days to help acclimate him to his new school and his aide and teachers to
him.
On August 30th we repeated the rodding surgery at Omaha Children's Hospital. Things went much smoother this
time. Mom was allowed in the recovery room and his pain control was much better. Avery had a better
surgical outcome as well and the rod was placed in his left femur without complication. He was kept in the hospital
and extra day due to refusing all liquids(just stubborn)and a fever but we got to go home on postop day 5. His
sister Alexi came for this surgery and she was a big help. They both got their IV medicine(Pamidronate) while in the
hospital so the room was crowded. The flight back went smoothly and he was ecstatic to see his siblings
and then his house. He began to take liquids on the plane ride home--my thoughts is he just couldn't take the hospital
setting anymore. He has become quite the home body.
Avery returned to Sandhills Children Center on September 7th (the day after labor day) in his wheelchair. He was
doing so wel it was hard to believe that he had had major surgery. He was scooting around on the floor and not requiring
any pain meds. He has his own aide and she is wonderful. Kathryn helps to protect Avery from other children who
might accidentally hurt him and she is able to give him more constant therapies. Avery now will not eat anything
that is not solid. He started out not being able to tolerate anything but mush but now yogurt and anything mushy makes
him gag. He loves juice and milk and drinks probably 20 ounces of milk a day. He likes bite size regular foods
and can feed himself (mostly with finger but sometimes a fork too). He likes to brush his own teeth.
In late September he spent a week at the beach with his family. He loved the sand and ate some shells.
He is learning that it is OK to be dirty some of the time.
Avery was fitted for a helmet or Cranial Doc Band right before his surgery. He began wearing it in early September
and by 2 weeks out we could tell a difference in the shape of his skull. Avery has plagiocephaly from being
left lying in a crib for so long and we are trying to reshape his skull now to try to prevent jaw malalignment later. They
have never done a child this old(3) or one with OI so this is all new territory but I believe that we have a better chance
of correcting him due to his OI. We are required to drive him to Charlotte, NC which is 2.25 hours each way for
a 15 minute fitting every 3 weeks..............hope it is worth it.
Avery went on his first Cruise in early October and was the star of the ship. Carnival did a great job with
both the OI kids in their Camp Carnival and Avery loved the elevators(especially the glass ones). He is looking
more and more like a little man these days and his receptive language is growing and growing. In October 2005
Avery continued to make great strides in preschool. Everyone remarks on how quickly he is catching up. He has
said "pudding" "dog" "cookie" and of course "mommy" and "daddy". For Halloween he was a tiger and he
quickly understood the importance of ringing door bells and getting candy. His trick or treating incorporated his PT
goals as he was encouraged to walk up the steps and porches holding onto our fingertips so he could get his candy.
He also began his therapeutic horse back riding at Prancing horse and from the start just loved the animals. He seems
to sit a little taller and act a little older after his rides. He is now 28lbs and 32 inches(arrived at 22 lbs and 29in).
November 2005 was a very busy month for Avery. He got to do Prancing Horse every Tuesday morning with his class
and in the afternoon he went while his sissy got to ride. He had a checkup for his helmet and his head reshaping shocked
the doctor. IT IS WORKING. Avery is doing really well in school and is starting to become much more social.
He is trying to engage and encourage other children to play with him. He loves to ride his tricycle and swing in his
swing. He is cruising on furniture and walking with us holding his hands and will walk behind a walker but HATES it.
He still has Sensory Integration issues but they are becoming less and less everyday. He has started back in water therapy
with Mom and he goes 2-3 times per week. He loves to run up and down the ramp like a big boy. He is babbling a
lot more and we feel he will talk all of a sudden one day(hopefully soon). Avery was selected as an Honorary Tree
at his preschool's fall fundraiser. He was given a tree that was decorated in Nemo with toys under it and beside it
was a poster with his story and picture. $5000 was donated to his school in his name. Thanksgiving was a
treat to see in this little boy. He so enjoys food and watching him relish the turkey and potatoes was all we needed
to be thankful for. Avery is now reading books.........yes I mean reading books. He scoots around the house
with a book in his hand almost constantly. He wants you to read it to him and when no one is around to read it to him
he sits for quite some time paging through the book as though he is reading the words. He has now developed a much larger
span attention(at least for this activity). We have now had to get all 4 kids to read to him as he is really addicted.
When we brought him home he could not spend more than 15 seconds with a book.
|
