Latest Medical Updates

Whew...we have had plenty of visits to Rady's this week and to Kalista's second to last physical therapy session.

Last Wednesday we had Kalista's almost final PT session. We impressed Ms. Tami with all of our new found moves. Kalista walked around everywhere...climbed up stairs and even danced a little bit. Since there were no obvious concerns, we will be back for our last PT visit when Kali turns two. Yay!

On Thursday, we saw Dr. Gosman for our follow-up visit to see where we stand regarding the tissue expanders. Just one look and she knew Kalista was still too small for surgery. Besides her petite stature, her g-tube is another concern. Dr. Gosman would love to be able to do the surgery without Kali's g-tube in place. The possible mixture of stomach contents and the material for the tissue expanders are a big risk factor for complications...not good. So our job until our next follow-up visit in January is to get Kali eating up a storm so we can wean her off her tube.

Kalista is too smart! Just today, she held up her tubing and food container to Matt, letting him know it was time to eat. Ugh!!! At least she knows one way for food to get to her tummy...we just need to teach her the other way.

So bottom line...no surgery planned.

We saw the nutritionist today and because our insurance has decided to drop all nutritional coverage, we have been responsible for some pretty expensive formula for the past two months. Rayna, our nutritionist, gave us the thumbs up to switch Kalista to a more commercial full nutrient formula, such as Pediasure or Boost for Kids, given that she can tolerate it well. We'll see which one Kalista likes the most and go from there.

It was a packed day; we even have feeding therapy/OT this morning. Kalista joined the other two boys in her group for another uneventful week. She just sits and watches one boy chow down food without chewing (his parents are constantly doing the heimlich maneuver) and then we have another little boy who chews, but doesn't swallow. Kalista is another category in itself...she can chew and swallow, but doesn't want to bring foods to her mouth regularly. She is slowly getting better....she tried grapes today for the first time and will eat yogurt melts and star shaped rice puffs if we put them in her mouth for her. One baby step at a time....

Cardiology and Physical Therapy Updates

Cardiology Update:
We saw our cardiologist on Monday and he said Kalista's echocardiogram looks fine. He had no concerns, so we won't have to see him again until October.

Getting ready for bed

Physical Therapy Update:
We had a fantastic physical therapy session today. Kalista showed off all her skills and Ms. Tami was totally excited of all the new things she could do. Crawling still seems to be our biggest goal, but we have been encouraged to move on to one handed assisted walking. Woo hoo....one step closer towards running! We asked about what we should do about Kali's belly when she does start becoming more mobile and Tami told us to wrap her belly with an Ace bandage to give her more support if she falls.

Ironically, Ace bandage "compression wrapping" was one of our after-dinner family conversations as a way to shrink Kali's belly bump. We follow the blog of a family whose little girl has a giant omphalocele too and shares many of the same doctors as Kalista. They recently saw the same plastic surgeon we go to (Dr. Gosman) and compression wrapping was suggested as they await surgery. We also found out that she is preggos and due in July...congratulations Dr. Gosman! How will this affect any surgical decisions about Kalista? We're not sure...but we will keep you posted after our appointment with her next week.

Kalista proudly showing off her mode of transportation

*The Gift of Life*

If you know someone walking in a future March of Dimes walk, please support them and donate. Millions of babies born prematurely and/or with birth defects benefit greatly from the support of the March of Dimes. We will be missing our walk in San Diego because Jen is working and Matt will be getting off from his shift early that morning. The only person available is Kalista....and she can't walk by herself! Please put your feet in her shoes and pay it forward!

New Beginnings

Hello everyone!!! Happy NEW Year! We have been very busy getting the new year under way and our schedules are more packed than ever with Kalista's therapies, doctor appointments, playdates and more. We have officially started Gymboree on Wednesday afternoons and she loves hanging out with a dozen other babies. We think it may have started her interest in crawling. Kalista has been trying to leap out of our arms and getting on those hands and knees. Our physical therapist will be so happy to hear this.

Kalista and her funny face

Her hair is long enough for pigtails now

Hanging out around the house

Jen's childhood piano is making its rounds again

A future Bach? Mozart? Beethoven?
Lady Gaga? (hee hee...had to throw that in there)

Kalista attended her first two birthday parties this past weekend. She had a great time and enjoyed all the festivities.

Today is the first night putting Kalista in the big girl crib in her room to sleep through the night. She has been sleeping in our room since she came home and now that she has officially outgrown the co-sleeper, we needed to take the next step and get her used to being in her own room. So far, she has done a great job transitioning. It's only day one...hopefully, we didn't just jinx ourselves there.

Christmas Recovery

Sorry no pictures today! We are slowly recovering from Christmas and cleaning the explosion of generosity that lay upon our living room furniture. Thank you Bay Area family for all the holiday wishes and gifts that came our way! Kalista thanks you all very much from the bottom of her heart.

Kalista had her second visit with Miss Tami, her physical therapist, super early this morning. We are thinking 7:30 am therapy sessions were a big mistake on our part. The good news is that it appears that Miss Kalista is on the right track and hopefully will be up and crawling on time. She has the foundation and stance for the crawling position, but she still needs to work on her upper arm strength. We brought in our "Belly Board" and gave her a real good workout on it. Poor Kalista did not like it one bit. We know it is super hard work for her and her tiny arms. Our homework for the next two weeks are: pivoting on our belly, side lying to sitting, slow crawling simulation and belly to side roll.

Today was eventful! We also had a great surprise visit from Jen's Aunt Betty and Uncle Alden today. They have officially joined the group of relatives that have seen Kalista in person. We are a little bummed that the San Diego weather decided to be a little hostile for their stay, but we can only hope tomorrow brings a better day. The wind has reeked havoc in our backyard and has scattered our belongs all over the place. On the positive side, the sound of the wind makes good background noise for sleeping.

Our Weekly Update

It's the weekend before Christmas and our house is filled with Christmas music, presents and holiday cheer. We put our tree up and decorated it with all our favorite ornaments. Kalista loves the beautiful lights that cover the tree at night. She even helped wrap some of the Christmas presents this year....well...more like played with the gift wrap and tissue paper. The crinkle of the paper is much too enticing for her.

Here's the latest in the Lam house:

Kalista has been working hard in OT with feeding. She still uses her g-tube 100% of the time for nutrition and feedings, but she can now devour a teaspoon of baby food at a sitting with the help of Jen's finger as a spoon. She is a big eater in the evening and that is when we work the most with her. Her favorite is still applesauce. We tried veggies this week in OT...yummy green beans...but she didn't really enjoy it at home. We were also given Dum Dum lollipops to try as oral stim homework. Who thought babies and candy couldn't be in the same sentence?

This is Kalista's "I'm Done" pose after eating.

Kalista and her new homework item: Dum Dum lollipops

We had our first physical therapy evaluation this past Wednesday with Tami. We were given activities to work on: sitting side saddle, crawling pose, weight bearing on her arms while standing and transitioning from lying to sitting. Whew...just typing all that gave me a workout!

Because of the "O", we haven't had much tummy time and that is putting Kali behind in her gross motor development. After reading many posts on the MOOs site about how other families created special foam cut-out beds for tummy time, Matt and his engineering team decided to create one for Kalista.

Our special tummy time board
(made of an elevated wood slab with a hole cut out for the belly)

Tummy time is still not her most well-loved position

Kalista is also developing an elaborate vocabulary: ba, ma, oh, mmm, ga. No "mama" yet though! She giggles at us whenever we make the motorboat sound, pop, click or smack our lips. She has also started reading to us before we go to bed...just kidding. We do the reading, but she likes to turn the pages.

Enjoying her books before bed

Other than that...we are just chugging along with our daily routine and can't wait until Christmas comes.