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!