Summer.....where did it go....

Wow....so it has been too long since my last post. I haven't posted anything in 2010...Seriously...talk about insane! I really have no one to blame for this but myself and my lack of words to share....So now that summer is almost over and school is about to start I am forcing myself to be a better blogger....This post will probably feel more Christmas card like then my usual bloggy self....but I think an update on all is in order before I am move on to my usual.....some of what is written may be totally random and out of order....yep I am pretty random sometimes....and you are stuck with me....

Since January we have had many guests visit us down here in Texas...Grandma's, Nanna's, Grandpa's, Aunts, Great Aunts, Uncles, Cousins and the girls sweet cousin Kieren!!....We LOVE having guests in town and the Harper Hotel is always open for business....just wanted to thank all of our visitors we loved having you here! Maybe when I have a bit more time I will upload a slide show with all our famous guests!

So lets see.....The Twins finished and graduated from Preschool in May....they are anxiously awaiting the start of Kindergarten in about a week....I have never seen them so excited! They are thrilled to ride the bus (the bus stop is right outside our house, how could this mother say no!).....Both have grown up so much the past 8 months.....Kiara is as head strong as ever, sometimes I feel like I am looking in a mirror, did I really treat my mom like that on occasion....WOW! (Mom, I am sorry) But most of the time she is a sweet heart. She loves to learn and is always working in her Kumon books, she is showing signs as leader but also does a great job of encouraging her sisters to lead too!.....Her new favorite movie is Harry Potter....Some may thing I am crazy for letting my girls watch it.....but all 3 really enjoy it....wizards and magic, oh my!.......Mikiah is as sweet as ever....that is until she has sugar (Nanna learned the hard way by sugaring Strawberries).....it seriously makes her crazy...so we limit it! :) She still loves to dance and art projects....she sure is creative and can sing just about anything.......We are still taking quarterly trips to Houston to see her Endocrinologist....She had an MRI in March and started growth hormone then too.....Her daily shots are going great and we are seeing great results with her growth.....She still loves a good princess movie...she is my true girly girl!......Still so hard to believe that Mikiah and Kiara will be 6 in October....really makes you take a step back....

Lila....(aka my little trouble maker)....nah, not really but she sure does know how to push the buttons of her older sisters! So crazy she is 3....considering she was 9 months when we moved down here.....She enjoyed her last year of freedom.....but is super excited to start preschool in the fall....not sure how she is going to feel being the only one home during the day with mom but I am guessing she will love it while missing her sisters at the same time.....She loves to sing and dance and has to be the center of attention! And boy is she a ham!! So funny! She does a good job of keeping us all laughing! As for her CP, she is doing great....running everywhere and barely showing any signs of limping....Still have occupation all therapy to do for some things and to strengthen muscles...but for the most part people will probably not notice anything.....

Shawn is still working at his same job and loving raising his 3 girls.....he is quite the BBQ master and makes a mean smoked brisket!! I am still working for WSU and have been training with a good friend to run a 1/2 marathon in November....I must say the training process has been fun, we have group runs on Saturdays and a workout schedule during the week to do....I think I am going to do the training program again next summer even if I decide not to run the 1/2 marathon again....who knew running could be fun! HA!

So that is all that has really been going on....a whole lotta nada! We have been enjoying our summer out back with the kidding pool and card games.....summer sure has gone by super fast! But are all excited for the adventures that lie ahead of the girls.....I promise to keep you all posted on our life in the land of Texas a bit more often.....

Catching you up newsletter....

So Happy Holidays....Yep, I am back...I have totally neglected my blog for far too long....part of it is I am running out of storage and may actually have to cough up some money........we shall see.....We have been doing great and are amazed daily by our children, just living life and loving it.

Shawn continues to do amazing at work and I have taken on another job as well....I work for Shawn's parents (AGPRO) as well as my WSU job and after school care. Both of my real jobs (I consider after school care too much fun to be called a job) of course are done remotely...I love being able to continue to work from home while raising my 3 girls......I still can not believe how fast this year has zoomed by.....My dad and Ri were here for Christmas, it was so wonderful to spend the holidays with family....and of course Uncle Joel and Jessica came down for a visit too.....just love them to pieces!

Kiara loves school and she loves to do homework books (that is what she calls the Kumon learning books, she has like 6 of them), she will sit down and work in one for hours at a time, taking it wherever we go....She is growing up super fast and loves to act like the oldest.....mother hen like I suppose! She likes playing outside with boys in the 'hood....and she is one of the tallest in her class, neck and neck with the boys....She is pondering getting her hair cut shorter, we shall see how this develops!

Mikiah is doing wonderfully....she really loves school, music and dancing. We are getting ready to put her into ballet soon....she is so excited. She is my little sous chef in the kitchen and enjoys helping make all our meals.....it is so fun for both of us to work together to get dinner on the table. She is pretty excited about her Paula Deen Cookbook she got for Christmas! On the health front all is good, insurance approved her to be able to take Growth hormone therapy....She just has to have an MRI and then we will get started. The shots will be daily and we will re access at a time in the future if they are helping. We will keep you posted on when we start and how she is progressing.

Lila is my little mischievous one. She likes to cause a little trouble here and there but she is so sweet.....She is a talker and she says so many sentences and statements that really blow Shawn and I away, it is like talking to a mini adult sometimes. She is just growing up too fast, she certainly doesn't act like a 2 1/2 year old until she throws a fit! She loves playing with her sisters, but is perfectly content going in her room, shutting her door and playing by herself. Which is good considering her sisters will be gone all day next year.....She will be attending preschool next year, probably 3 days a week...she is excited for that! On her health front we will be starting Physical Therapy soon but she is already running better then she use too.....

I have included an album with pics over that last few months, overkill I am sure....hopefully it will not be this long until I blog again!!! You can tell after the first few Christmas day pics the quality of pictures changing.....I got a new Nikon Digital SLR D3000 for Christmas, I LOVE IT! Hope this post finds everyone doing well and gearing up for a Happy New Year!

Fall-Winter 2009

Another trip to Houston....

Well we have just gotten back from another quick trip to Texas Children's in Houston. We left last night after Shawn got off work, at some dinner at Buc-ee's and rolled into Houston around 8.30ish.....MJ's Endocrinologist only works on Wednesday so we will most likely make it an every 4-6 month routine........We do not mind the drive so much, love Buc-ees and the girls like staying in the motel....Maybe one time we will take some days off and actually do some sight seeing....Any who, MJ's appointment went well. We had her blood work done before we left and it all came back normal, this is something we will have to do yearly....the only thing that stood out was that her height is beginning to fall off her original growth chart, she is still in the 19% for her age (down from the 33% at her last appt 6 months ago).....We knew it was only a matter of time for this to happen....most TS girls fall off the chart at age 2-3......We did ask the endocrinologist about how tall MJ may be w/o any treatment and it is a rough calculation but we are looking at 4'8" for a final height. We take her back in December and will have some important research to do on Growth Hormone Therapy before then.....Most likely she will start Growth Hormone Therapy in Dec if we choose......We have learned that there are more benefits then just height increase for girls with TS and I was happy to see that our Drug Prescription Insurance covers most of the brand names of HgH.......We would most likely just have to pay our co-pay depending on which one our doctor prescribes......I have to admit the idea of MJ getting a shot everyday doesn't thrill me......but I also do not want her later in life questioning why we didn't try HGH to help her be taller.....Quality of life also comes into play.....Oh the decisions we get to make as parents.....

One Stride at a Time.......

Well we certainly have had a roller coaster of a week.....

The twins had follow up appts for their ear infections on Monday....Kiara's ears were perfect and the infection was gone...but poor MJ, her ear infection was worse (after a round of antibiotics) and she was running a fever....so she is finishing up her second round of antibiotics and doing great....When she is done with her medicine, she and I will go get our blood work done.....She has to have hers done w/results by Aug 12th (for her appt at Texas Children's) and I just need to get mine done....so I thought it would make it easier if we did it together....Lila had an appt on Monday as well....nothing like forking out $90 in co-pays! She has had a rash on her arm that has been getting worse....sometimes it goes away but lately it has been pretty red....well anyway she has Eczema....so she got a prescription for that along with a ton of samples....the non-steroid cream she got worked great and it has now cleared up.....but I know it will come and go.....I had it as a child too....

On Wednesday Lila had an appt at an Orthopedic Surgeon...She has always had a slight limp since she started walking at 14m, we thought she would grow out of it, but finally made an appointment to get it looked at. It has become much more noticeable now that she runs everywhere.....Well we where shocked at the diagnosis....We were thinking something was wrong with her hip or her knee or maybe her leg was longer.....but it turns out Lila has a very mild case of Cerebral Palsy. I couldn't believe what the doctor was saying....my little girl has brain damage on her right side of her brain somewhere that is affecting her left side motor skills for her leg and arm....Most likely Lila's CP was caused by damage to the motor control centers of the developing brain during pregnancy (which is about 75 percent). Lila has/is/a Spastic hemiplegia, so only one side of her body is affected.....she basically drags her left side of her body along when she moves/walks/runs....We never noticed her having trouble with her left arm but of course now we are watching her every move....If you looked at her you wouldn't notice anything....Anyway we now need to find out where the brain damage is to see if the damage that is done will effect anything further as she grows up......One of the bright sides of CP is the damage is already done and it is non-progressive. We do know Lila will need Physical and Occupational therapy and will continue to have an Orthopedic doctor. On June 25th Lila will have an MRI done of her Brain and Spine, she will be fully sedated (we have experienced this before with MJ so we are ready and know what to expect).....The results will come in while we are on vacation in WA but the Orthopedic Dr will call to confirm where the brain damage is and what to expect when we go to Lila's Neurologist. On Aug 5th after we get back WA we will be taking the MRI results to the Neurologist to find out the next course of action if any (besides physical therapy) and we will find out if there is further brain damage....it all sounds pretty scary sometimes but we know that we all with get through this and we will do everything we can for Miss Lila.....She is still our happy, smiley, and chatty little girl....she will talk your ear off and still continues to amaze me with her vocabulary....We thank you all for your continued love and support....and look forward to seeing most of you soon!

In other news......it has been super hot down here this week....we have tipped into the triple digits for the last few days.....the only way to be outside is to have the pool out.....it makes a world of difference and makes it easy to stay outside most of the day.....I mean who doesn't enjoy sitting in a kiddie pool staying cool.....As we head into our hot months down here we can not wait to get up to WA to get out of this super hot heat where the overnight low is cooler then 78 degrees....Looking forward to seeing everyone soon.....here are some shots of our fun in the sun.....

Few Shots from Swimming June 09

Turner Syndrome......

This is a sort of difficult post for me today, not exactly sure why, but here goes. We have decided to bring you all up to date since y'all are a part of our support system. Most of you do not know but Mikiah was diagnosed with Turner Syndrome about 4 days after birth. We had a few indicators at birth to have the genetic testing done, one being edema (swelling) in the hands & feet and her slightly wide spaced nipples. Turner syndrome (TS) is a chromosomal condition that describes girls and women with common features that are caused by complete or partial absence of the second sex chromosome. TS occurs in approximately 1 of 2,000 female's born and in as many as 10% of all miscarriages. For more in depth info here are the basics.

Mikiah has a few of the physical characteristics but for the most part her case is fairly mild (if you could call it that). She is missing her second sex chromosome on all of her genes which could lead to her being of smaller stature, average girl with TS is 4'7'', and she will have premature ovarian failure/infertility. Estrogen replacement therapy is necessary for breast development, feminine body contours, menstruation and proper bone development & Fertility without assisted reproduction therapy is rare (less than 1%). So MJ will most likely not be able to bare children with out medical intervention. We will also need to continue to keep a close eye on her Heart, Thyroid, Kidneys and will be testing for diabetes.

The reason I am catching you all up on this today is we just had her first Endocrinologist appointment. We drove to Texas Children's Hospital in Houston and learned a bit more about the next course of action. We had a good appointment with our new Endo Doctor. We will be going to see her every six months for the time being. The main thing we are watching for is her growth pattern, she is currently in the 33% for height, so she is still plotting on the normal growth chart. Once she begins to fall off that growth chart we will begin discussing growth hormone therapy with our Endo doctor. Most TS girls start growth hormone therapy around age 4 (we would like to avoid it if we can but also want the best for MJ and if it's a few more inches then we will choose to do it). Before we head back in August we will be running a few baseline labs for Diabetes including glucose levels and Insulin testing. She will also be doing a few more labs and blood work. We will be going over the results of these labs in August. So more to come later.

MJ was great today and enjoyed her appointment, although I think she was a little nervous as Texas Children's is HUGE, but super colorful and fun! She's a trooper!!