Sunday, June 14, 2009

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

6 comments:

Erin said...

love the pool pics! the first pic of lila...looks so much like you! i think she has your smile! cutie pie! you are truly blessed with 3 beautiful girls!

Brittany said...

Wow...what week. I will be praying for your sweet girl and for your whole family. That would be such a hard thing to be told...you seem to handle every situation with such grace. Thanks for sharing...you are such a wonderful mom. Those girls are blessed to have you!

Molly said...

Oh Kaelee, I'm so sorry to hear about everything you are going through! I know how hard it is to hear something like that, putting a name to Lila's problem is a double edged sword, so nice to know what's wrong but cerebral palsy conjures up so much fear too. It sounds like you guys have all your bases covered. All our love to you all though.

Hope everyone is happy and healthy now going into this new week. We are certainly looking forward to seeing you all soon!

PaulaG said...

Love the pictures. The girls looked like they were having fun. Just think only three more weeks and I get to give you one BIG huge HUG!!! Love you all. Mom

4 Cougs said...

Kaelee, so sorry to hear about Lila's diagnosis. You seem to be handling things well though, and ready to take things as they come. Can't wait to see you guys in Pullman!

amieable said...

Oh Kaelee I'm sorry to hear this. I agree with Molly that the diagnosis is scary because it conjures up scary images. But I bet the more you and Shawn research and get beyond the fear, the diagnosis will actually HELP you find the best way to help Lila and let her be herself. I am always amazed how you and Shawn handle stress.