Spectacular Spectacles, Easter & More

Happy Easter! We had a wonderful day celebrating! We enjoyed a beautiful Easter service at St. John's with a terrific sermon and gorgeous music, as always! Before church, I attempted to capture a picture of the girls. It's getting near impossible to get my two beautiful little girls to a) actually look at the camera and b) actually be smiling when I take the photo. Therefore, here is the best I got of the girls in their dresses Easter morning. I still think it's pretty darn cute :)

Here is one of Miss Belles in her new glasses. She is very proud to tell that she picked the two new pairs out all by herself. She picked this black pair and a purple pair :) I think they make her look so grown up! The reason for new glasses-- her eyesight is improving!! Yay!

Sophia also had an eye appointment this past week and she will be keeping the same glasses for now. Everything continues to look good overall. Upon reviewing her most recent MRI and his exam of the optic nerves, our pediatric opthamologist contends with Sophie's neurologist. He too believes her condition is static-- a periventricular leukomalacia rather than leukodystrophy (which is degenerative). Once again, I thank God for our many blessings! Praise Him! And praise all of the wonderful doctors and therapists that take such wonderful care of our baby girl!

Sophie is so proud of her finds Easter morning!

Isabelle was very quick to scout almost all of the eggs and even left the ones down low for her sister. She was very intrigued by the Easter bunny this year... wanting to know exactly how he gets in our house. She also made a keen observation while visiting the Easter bunny at my aunt's work... as the Easter bunny exited, she exclaimed, "That wasn't the real Easter bunny. I saw skin on his arm, just like ours." Hmm...

Sophia enjoyed coloring Easter eggs... or rather just wanted to throw the eggs and splash in the dye.

My big girl coloring eggs :)

The girls recently helped their friends Brenna and Alexa celebrate their birthdays at Monkey Joe's. Isabelle was in heaven! She anticipated it from the moment the invitation came and is still talking about it weeks after. Sophia even got to try out one of the inflatables for the young babes (with Mommy holding her on the different inflatables)... she wasn't so sure of all the toddlers jumping all around her, but seemed happy enough with her first experience.

Playdate at the park! Loving this beautiful weather!!

Sophia loves going to the park too... or just our backyard. As long as there is a swing, she is thrilled. To date, "swing" is one of her most popular requests by sign :)

health update on our little warrior!

Sophia has had a few different appointments in the past few weeks and so I wanted to share the outcome of those. To sum it all up: We are very optimistic and hopeful and certainly grateful!

In early March, Sophia was seen by her gastroenterologist. At this time, he is pleased with her weight gain. While she has been slow to gain, she has not lost weight!! She now weighs 18lbs. 6 oz. :) While he would still like her to have a higher level of fluid intake, he feels that she is healthy and that we do not need to consider a g-tube placement (feeding tube) at this time!! Needless to say, we were elated with this news. She does continue to struggle with eating and drinking in general, as well as her reflux, so she will remain on her medication and medical food supplements. As I've mentioned, she also has a feeding goal now in which she receives therapy from her OT so we hope to be able to move forward with her texture issues and gagging. We continue to work with a nutritionist as well so we are thankful for the many supports.

She also had her 15 month check-up with her pediatrician who continues to be pleased with her progress. As usual, Sophie charmed her with smiles, blowing kisses, and her overall happy nature! She weighed 18lbs. 6oz. and her height was 29 3/4 in. She's a growin' girl!

Finally, we had an appointment with her pediatric neurologist at Blank. After talking with us and observing Sophia (along with her reading of the MRI done back in December that showed "no change"), she said that it is all "very encouraging". Honestly, upon leaving the appointment, I was disappointed. There is always that want and need for more information. I dared to ask her opinion of the original diagnosis of cerebral palsy and she still believes that Sophia has moderate CP. Unfortunately, I was reminded once again that only time will tell and that we have to be hopeful and push forward based on the progress she continues to make. We are SO PROUD of her! I know that I say that a lot, but those words simply do not do justice to the pride we feel on a daily basis. Even Isabelle gets excited about all of the things her little sister is doing! At this time, her doctor does not feel we need to do another MRI for at least a year, unless we would see a regression in skills or any indication of seizures... both fears that I try very hard not to think about. The fact that she does not see the need for another MRI anytime soon is promising, as she indicated that she believes an MRI would show no change. She also commented on Sophia's obvious understanding of what is going on around her. As parents, we have no doubts that she is cognitively very aware... of everything! However, it is such a relief to hear her doctors and therapists support that as well. So, while I initially felt a little disappointment, Jason helped me to see that it was actually a good appointment... and with that, we believe whole-heartedly in those words that the doctor shared upon leaving the room... "It is all very encouraging."

For all of the support, for all of the prayers, for all of the encouragement... we thank you!!

*Look for an update soon on our Miss Belles who will be sporting some new specs in a week or so! She picked them out all by herself (with a little guidance) and looks so cute!

Last of all, I wanted to share this link. It is a blog that I read regularly, written by a mother who has a son with CP. I like to believe that there is a reason that I read this particular post. Enjoy-- I think it's a great read for all!

http://www.lovethatmax.com/2012/03/babbling-in-back-seat.html

Good Ridance Winter!

It's hard to believe that we'll be welcoming spring next week. We are excited to get outside more and to say good-bye to these winter germs! We made it through the last round of colds and ear infections and now we have moved on to another round :( Sophia is also getting 5 new teeth right now (yes, FIVE!) including some molars so she has been a bit of a pistol. We had limited paci use to nap and bedtime, but this poor babe has needed it a bit more often lately and I am not objecting!
Isabelle always loves her arts and crafts! Here she is busy finger painting :) She is getting very excited for preschool next fall. We are hoping for her to attend a 4-day reverse integration program at Jordan Creek Elementary in West Des Moines (where I previously taught). For those that don't know, reverse integration simply means that she would be an integrated "peer" in a preschool program that serves children with special needs. In April, she will go for story time and we hope to hear shortly after that if she is officially "in". I am really hoping this works out as we think it will be a wonderful opportunity for her and I know she will gain so much from both her peers and the wonderful teachers in the program! Our big girl is certainly ready for new adventures!

Sophia turned 15 months on March 1! My baby is growing up... and yes, that makes this Mama a little sad at times. However, we are celebrating every day and every milestone with this little girl (no matter how small/big-- think throwing tantrums at bedtime-- tiresome, yes, but very age appropriate)! We are so proud of her. She recently started receiving therapy for an oral motor (feeding) and a communication goal. While she is babbling some and is certainly very vocal, she still does not produce any spoken words at this time. However, this smart girl has at least 9 signs that she uses to communicate with us on a regular basis-- more, bath, up, want, ball, eat, help, color, and my turn. She also shows great understanding of her environment and all that goes on in our world! We believe, as do her therapists, that Sophia will eventually learn to talk. This girl has acheived so much already-- I have absolutely no doubt that she will be an even sassier Miss Thing than she already is!

Daddy and his girls ~ Jason had a boy's weekend recently. They went to an ISU game and then had poker night at our house. The girls couldn't resist being part of the fun!

This is just one example of Sophia's explorations... she is scooting everywhere now and getting into everything! I hadn't realized before what a blessing it is to need to baby proof your home... it's all about perception! While she is keeping us on our toes, we are loving every minute of it. We see it as more prayers being answered... she is mobile (in her own way) and curious and doing many of the things that any other 15 month old might be doing. We are so proud of her... and as you can see in the photo above, she's usually pretty proud of herself too!

I love this and so I had to share! Isabelle is holding her poster that she made for Jason after we were able to watch him play basketball in the Iowa Games. We are all so proud of Jason, but perhaps no one more than Isabelle! This past year, Jason joined a basketball league that he plays in weekly. He really seems to enjoy it and we enjoy watching him do something he loves. This coming weekend, he and his teammates get to play before the Iowa Energy game at Wells Fargo. We've got our tickets and we're ready to cheer Jason on!!

Once again, I'd like to thank each and everyone of you who take the time to "check in" on our family via our blog. As Jason says, "This is the craziest life I've ever known." And we are loving every minute of it!

Happy Valentine's Day... and then some!

My two loving little girls :)

I wish I had a Valentine picture to share, but our Valentine's Day took a quick turn for the worse and well... let's just say that Sophia's shirt was no longer wearable before I was able to get a picture of the two of them together. Yes, sickness has overtaken the Karwal house. This past weekend, Isabelle's runny nose had turned into a horrible cough that allowed no one to sleep. We took her to urgent care on Sunday and after starting antibiotics for pharyngitis she spiked a fever over the next two days. Poor babe was quite miserable. It's awful to have your babies sick... but I do enjoy the cuddle time! Meanwhile, Jason and I had both gotten colds as well. We were thanking our lucky stars that Sophia remained healthy. However, Monday night was a rough one. She also began refusing to eat or drink and what very little we did get in her, she couldn't keep down. While she acted fine for the most part during the day and did not have a fever, these were the same indicators we had last month when she got her first ear infection. So, I took her in to the doctor on Tuesday afternoon and sure enough... double ear infection. And as we have come to know with our dear Sophie, a simple cold or ear infection brings on a host of other issues. She vomited up her entire first dose of her antibiotics. Since then, she has had a fever, developed a rash, and has NOT been feeling well at all. For a girl who eats and drinks very little anyways, it is a constant battle when she is sick. The doctor prescribed a second antibiotic that might agree more with her GI tract, however, she immediately vomited it up as well. She is also having trouble keeping her reflux meds down which does not help matters. We ended up at the doctor again today and she went the route of an injection of antibiotics. The doctor also took a blood draw to look at her white blood cell count, which we are still waiting to hear back about. My little babe fell asleep in my arms at the doctor and is still napping now so I am praying that the new antibiotics are doing the trick.

Oh... to add to the fun, I had a minor outpatient procedure done on my leg yesterday which has me in a bandage type cast until Monday when I go in for round 2! Good times at the Karwal household!! :)

Thanks to all of you who have sent kind wishes our way. I pray that both of our girls will be feeling much better in the coming days. And I hope you and yours are all well!!

Sophie playing at the table while in her new stander. She loves it and tolerates it well. It is certainly hard work but very motivating to her!

My Belles, loving the nicer winter weather outside!

Sophia is learning to "scoot" herself around and is getting into all kinds of trouble. Of course, we are cheering her on!

Me and my girls enjoying the snow... finally!

Our Little Warrior

Sophia was cast for her SMOs (braces) on her 1st birthday. Here she is pictured with, Karen, her physical therapist at Blank.

Sophia standing in her new walker- the mini pacer. As I shared, she is mostly just standing in it. "Walking" takes a lot of guidance from Mommy... we are mostly working on teaching her (body and brain) the reciprocal movement... one foot in front of the other.

Daddy and Mommy both helping... it is often a family affair ;-)

Sophie is learning to like her creepy crawler. (Notice Isabelle coaching her forward!) This is one way she does some weight bearing through her arms. She can't actually move herself forward on it yet, but we use it to again help teach the reciprocal movements of crawling.

We are always so proud of all the efforts she makes. Her strength continues to improve!

Sophia Update ~ January 26, 2012

I apologize for the length of time it has taken me to update the blog... what can I say? Life happens! :)

Sophia continues to do well in all of her physical and occupational therapies. She also continues to work on feeding with one of her outside therapists (and daily with her therapists otherwise known as Mommy, Daddy and Isabelle). It is still a daunting and exhausting task (that coming from me... I can only imagine how she must feel!), but to date, she has not lost any weight that we know of. She recently had a weight check and is up 1 pound from her 1 year check-up so we were happy about that! She has continued with her medication for reflux and has also started a nutritional/caloric supplement that she gets throughout each day. She has transitioned, if you can call it that as she certainly doesn't drink much of it, to a toddler formula that was prescribed by her GI doctor. She still is not doing well on her fluid intake, but not for lack of trying! It is all simply overwhelming some days. She will see her GI doctor in another month and we are a bit nervous about what will come of that.

She has made some great strides since turning 1! She is definitely more vocal and knows exactly what she wants! We have certainly seen a stubborn streak emerge along with some strong attitude which we think will serve her well in life. :) We aren't sure which of us she gets that from, but thinking that she definitely has some role models for such behaviors!

Just before Christmas, she was seen by her physiatrist, Dr. Ramsey, for a check-up. Overall, he feels that she continues to do well and has high hopes for her abilities in the future. There have been some more concerns about hip dysplasia (this was first brought to our attention when she was around 5 months old-- she had an x-ray at the time that did not support the diagnosis then). Dr. Ramsey is our "go to" guy on this issue before she would be referred to an orthopedic surgeon. At this time, he is not overly concerned (it could be a number of different things going on) and so we will be continuing to watch and rely on the advice of her therapists in regard to this issue. Really hoping she does not have to deal with one more thing! I am attaching a recent article that was written about Dr. Ramsey in the DSM Register for those of you who are interested. We think very highly of him and certainly consider him a source of inspiration!
http://www.desmoinesregister.com/article/20120104/LIFE/301040082/Doctor-helps-physically-impaired-kids

As I mentioned, Sophia was cast for braces on her feet (SMOs) back in December. She has had them for several weeks now and is doing well with them. She has special shoes that she wears while using her braces and I think she looks like such a big girl in them! She also got a walker in January... a mini-pacer and we are also trying some other equipment to assist in weight bearing for her legs. The problem we are continually running into with equipment is that our Miss Sophia is so petite that most things don't yet fit her properly. She is mostly using the walker for standing at this time. It will be some time before she can actually move around independently with the walker. We are at the beginning stages of it all and right now, just standing for short periods of time is VERY hard work for her. She does seem to love it though! You can tell that she is so proud of herself. It makes my heart melt! She also has started using a "creepy crawler" or a therapy scooter board to work on her trunk muscles and weight bearing through her arms. Ideally, this will give her a sense of mobility as well. I promise to get some photos posted soon of Soph using all of her new "stuff".

Finally, Sophia will begin receiving speech and language learning services through Early Access to aid her in the area of communication. I am so very proud of her in all that she has already done... she has recently learned two more signs! This therapy will begin in the next month. I am holding strong to my Faith that she will continue to amaze us all in these endeavors as well.

Thank you for all of your continued prayers on Sophia's behalf. We certainly feel them working!!
Love to all!

The Most Wonderful Time of the Year!

Good ol' Jellybean, our elf, was quite mischievious this year! He pulled all sorts of stunts leading up to Christmas, but this was one of Isabelle's favorites. He was playing in the sugar and candy sprinkles.

Christmas Eve... even after a very long, fun filled day and night at Grandma and Grandpa's house, her excitement kept her awake the whole car ride home so that she could be sure to set Santa's cookies out for him. I absolutely LOVE this time of year!!

The girls anxiously dig into their stockings on Christmas morning!

Sophie loved sitting with Daddy while opening her gifts on Christmas morning. She definitely had the gift opening figured out by the end of December!
Isabelle opening her scooter from Santa :) She has thoroughly enjoyed tooling around our house on her new ride, so once spring arrives she should be an expert at zooming around the neighborhood!

Isabelle loves helping in the kitchen... especially when it means baking and decorating cookies for Santa!

Isabelle proudly shows of her Gingerbread House! :) This year we started a new tradition, celebrating the 12 days of Christmas. Each day, the girls picked a paper ornament that I had created off the tree. Written on the back of each ornament was a special activity for our family to do together to celebrate the season. Isabelle loved this and was very excited each day to choose the ornament and do our special activity. She also enjoyed helping with the Advent calendar.

My beautiful girls... "Smitten with Daddy!"

We hope you all had a wonderful holiday season. We certainly did! In my opinion, this is ABSOLUTELY the most wonderful time of the year. I am so thankful for our family and friends and for my loving husband and most cherished gift of all... my two beautiful little girls. We wish you many blessings in the New Year. May you know God's love, for it is great!