A cup and No Pump

Caroline is trying new things this week. I am so thrilled that she is using a sippy cup after working on this and trying lots of cups. She is able to hold it if I tilt or prop her up. To night is also her official night on her pump. It is no longer mandatory nutritionally for her to have the pump. So we are weaning to regular milk and a cup. It is a long process. She will have to keep her tube for six more months and I will keep the pump on hand until we remove the mickey button. We are hoping to get her stander, wheels, and leg braces all covered by insurances before December 31st!!!!

Daffos

Caroline, Carley, and I went down to the San Marco area in Jacksonville this morning. Caroline got measured and casted for her tiny foot braces. we got to pick out pink foam inserts and a little lamb decorated ribbon. They are to aid in standing. The good news is insurances should cover all of the cost for these. we will have them by January. They will also be beneficial with using her stander. we hope to get hat by then end of January!

Brave Carley

Carley has been very lethargic and not herself the past week. However it came in waves and spurts and she had no fever or other sick symptoms. Although she did not want to eat anything - not even cookies or ice cream. So we force fed bites and minimal drinks for about 5-6 days before I could not do it any longer. We went to the Dr. yesterday for a hopeful answer.I also cringed as I hoped that nothing major was wrong. So we waited two hours and had a simple urinalysis that did indicate a possible infection. We also talked and looked at her growth and weight. She did not have strep or anything obvious. We also checked for diabetes, but her urine did not indicate that. She actually started eating and getting some appetite back yesterday.
The doctor was not concerned, but Cameron and I were not happy with no answers. So we opted for a full blood panel today at another location out at the beaches and 45 minutes away. So we gave Carley numbing cream and cow milk from Starbucks and off we went. She thought she was getting her blood pressure taken. I told her it was blood work and that there was a little pinch and then it would be all over with. She did great and I think the cream really helped!!!!
She did scream and pitched a fit to get me out of here, but it was short lived. Cameron held her head and I squeezed her arm and all of us held her arm still - three hands for five tubes.
We got some normal results back today. We are awaiting more news, but are hopeful all is well.
I am needing to rule out anything for my own knowledge to know where to go next and how to get her to eat something!!!!! So we have been bragging on how brave she was today. I asked Cameron if he thought I can numb her legs up when we go for her four year old check next.

Pictures with Santa

Decorating the Christmas Tree and Making Christmas Cookies

Carley's 4th Birthday Pary

Gratefulness

It is now December and everyone is getting ready for Christmas. I just wanted to stop and reflect on Thanksgiving. This year has been another world wind for us, yet we have so much to stop and give thanks for. Cameron is enjoying work and we are glad he still has a job with this economy. Carley loves her school and has loving teachers to help her learn and grow. WE are grateful for all the caring nursery workers who reach out and care for Caroline on Sundays.
We are in progress of many things with Caroline. We are waiting for her stander and leg braces to follow in the coming months. She is still cutting her third tooth and making lots of progress at the dinner table. Last night she ate squash and salmon. We are weaning off her nighttime feeds. Our goal is January. I have been offering her a cup,but it has not happened yet.
She is making lots of noises and seems to have great intent to speak and interact with us. She says Mama and Dada clearly. She waves, claps, and peek-a- boos on command. WE are hoping to add new sounds. her eye contact is more frequent with less wait time in between our responses. These are all good things as reported from speech therapy. We are hoping to add OT in January as well. A year ago we did not know all Caroline would be able to do and we do not take her for granted or God's faithfulness to us. I appreciate each one of you who pray and continue to check in on us. May you all have a safe and Happy Christmas in the days ahead!!!!!

Just for Fun!

I have been reading lots of other people's blogs and sometimes laugh and cry. However there is this thing called being tagged and little assignments others can give you to learn more about you. I have never really participated, but always enjoy reading them. So this post is more about me rather than Caroline, Carley, or Cameron. I probably would title this 10 quirky things you may not know about me:

1. I love fall.
2. I strive to be neat and organized at all cost! It is in my blood.
3. I love warm clothes fresh out of the dryer.
4. I love going to the Starbucks drive thru - it makes me feel grown up.
5. I love the smell of sharpie markers.
6. I love wrapping all my Christmas presents before Christmas Eve.
7. I really have the best intentions for doing WW, exercising and losing weight before the holidays arrive!!!!
8. I will probably go back to work one day doing something part time.
9. Teaching my children the way to live and act is the hardest job I have ever had in my whole life.
10. I have a fetish for stationery.
Have a great week!

Caroline's New Toy!

Signing and Communicating

For some of you who have not met Caroline I wanted to share all she is able to do in tun taking, communicating, and responding to us. She shakes her head no - no, waves bye -bye when she deems necessary. She is able to give eye contact and motion toward objects nearby. She just started signing please and dog this week when we ask her too. She has been sitting since 14 m, but because she has no protective reflexes we have to keep a pillow close for when she gives up and falls back. She is now eating table foods at all meals along with baby food as filler. She also recognizes Cameron and I as Dada and Mama and is able to verbalize these too! we are excited in all of these new developments and efforts. For playing imitating games she plays peek-a-boo and patty cake. Loves to hear itsy bitsy spider and always raises her hands to music! We are grateful and hope more communication develops in time. She tries to copy our sounds and mouth noises, but sometimes noise just isn't there. Her stander will be here in two weeks. Our PT has been very instrumental in moving Caroline forward as well as our speech therapists in guiding me in how to practice exercises and try new foods with Caroline. I appreciate those of you who listen, watch from the sidelines, and encourage me as days go by. Caroline still benefits from much prayer and God's direction in our lives. I am blessed and encouraged!

Genetics and MORE

Wow! what a busy day. We woke to no power this am. So I took a quick shower and loaded the girls in the car for a Starbucks/ Goodwill drop off run. Then we went to the bank and got gas on our way to Physical Therapy. After therapy I took Carley through McDonald's drive thru. After we came home she played outside in her clubhouse with her mickey stuffed animals. She took her snack up there and fed each one of them. She is a hoot with a wild imagination. She took her socks and shoes off and snuck water in and out of the house to make mud pies. She is as much responsible as Lucy is for the freshly dug hole in the middle of my yard. They tag team and make their own sandbox despite us. Cameron and I have not filled her sandbox due to the fact of ants in Florida and the fact that Carley loves sand and dirt and think every toy needs some. So I plopped her in the tub before dance to scrub her black feet. Then off to dance. While Carley danced I went to the grocery store with Caroline and back to dance. Then home to put away groceries before dinner at Applebees.Then 30 min on the treadmill before I made it to the computer. So onto yesterdays news.......................

I was excited to meet Dr. Percyk our new geneticist. He spent an hour with us and was very interested in observing Caroline and listening to our story. I explained new things that were evolving and that daily things we deal with. We will not be going to GI or nutrition for the time being. We are still weaning her from her super duper high calorie milk to a regular milk. She is resisting! The stuff taste like a vanilla milkshake from McDonald so I can see why she is resisting the weaning process. Plain old formula is not the same as a milkshake....
She is now 18.5 pounds. Dr. Percyk said if she is ever hospitalized that he and Dr. Soha are to follow her care not any other docs who are not familiar with her history. He told me he likes to see his patients every 4-6 months to get to know the kids and families. He does not currently have any Caroline's, but had familiarized himself with her disorder and understood it as far as I could tell. He gave me a pager, cell number, and e-mail so he can be reached at anytime!
Very interesting to me. He also wants to read her first MRI to detect any mosaicism in her brain which may alert us to brain capacity, type of function, and possible seizure activity/likelihood. I never knew we could even look into these things. He wants to do a second MRI around April to compare MRI's. It is outpatient for her because she will have to go to sleep. Cameron and I think this maybe useful information for us and others. He offered to sponsor and speak at a future mosaic triploidy conference if I wanted to host/create the event with him to raise awareness and invite our support group to Jacksonville. How exciting!!!!!!!! This is a dream and a long way off, but none the less exciting! He said not much is known or published about this condition and mostly what is published is very dim. He said I look at Caroline and see that someone is home and she is very interactive and aware!!!! I smiled and beamed. So my list of doctors gets simpler and things get clearer to me as time marches on with God's blessing and surprises in our lives.

Happy Halloween 10-31-08

New Doc on the block

Caroline is 15m plus some and we went to her new pediatrician here that has experience with special needs across the board. I really liked her. Her name is Dr. Mary and she is a mom to six boys!!!!! Caroline weighs almost 18 pounds and got one shot. We are still doing our own thing with shots and we will not be getting the flu vaccine for her as long as the rest of us get one. Which Carley and I have already. Dr. Mary had nice comments to share about Caroline's ability to imitate and turn take sounds along with her. She also commented that she seems to have a normal IQ. I only can hope.
We talked about many things, shots, changing her formula and her upcoming appointments. We will visit the geneticist in November and the orthopedist in December. We will be discontinuing our appointments with the nutritionist and GI doctor. We will be weaning he from mega calorie formula to Next Step Enfamil. Caroline is becoming more chatty and rolling and flipping more frequently. She does not care to stay on her belly for one minute! We will still have night feeds and get extra liquids from her feeding tube. She eats baby food, but prefers anything we are eating. So we are moving to more solids and less baby food.
As far as current therapy we attend PT on Thursdays for an hour. we attend speech 2x a week, her speech has not developed as quick as I would like, but her feeding therapy is helping. Her PT therapy is moving by leaps and bounds.We will be adding OT therapy - but do not ask me how or when. I actually enjoy Tues free. I also started Weight Watchers on Wednesdays for a me appointment! We are trying to get a chair ordered and her stander ordered through insurance. we hope to have her stander in November. Just a few updates on what Caroline has been up too.

Disney Photos

Disney

We spent several days in Orlando. We went to Magic Kingdom, Animal Kingdom, and Hollywood studios. This was our first vacation together as a family other than traveling trips to see friends. We missed little Caroline though. She stayed with MIMI. We will take her one day when she is bigger and able to not take two naps. Carley had a good time, but was mainly interested in meeting characters and taking pictures. Her favorite attractions were the night parade, It's a Small World, and PlayHouse Mickey. She also loved the food court experience at our hotel. She did not enjoy very many rides because they were very life like and too loud and too dark. We think maybe next year she will enjoy the attractions more. We also shot pictures and did not do autographs. Next year we will have to take the autograph book along. The safari was my favorite attraction at Animal Kingdom!!!! She enjoyed most things at this park since she loves animals!!!!!
So we will have to post pics of Disney, teeth, and pumpkin patch!!!!!

Two Teeth

Caroline has actually cut two teeth. She is really babbling this week. Mostly DA-DA!!!!
We have three pair of newborn shoes that we are practicing wearing although even those are too big!!! Our wonderful PT, MS. Christina put foam inserts in her shoes to help give some support. We are also getting ready to order her stander this month as well as her little chair. She loves to play and sit up and see the world at this new perspective. She is always so smiley and happy! We give God thanks for her continued health!!!! We are taking Carley to Disney, but I do not know who is more excited Cameron or Carley!Caroline is staying at MIMI and PAPA'S. We may not take Caroline until she is 4-5 so she can really enjoy it!!! We will have many pics to post when we return from Disney and old pics of the pumpkin patch too!!!!!

Teeth

I think someone is getting thier first tooth...........................

Fun at the pumpkin patch

We had a fun time picking out a pumpkin with the girls. Despite the fact that the leaves were not changing and that the air is not crisp. The girls also had warm weather clothes on, but we tried our best to celebrate the season. Can you tell I would rather be in TX, NC, or TN? We did get some good pictures........ and Cam will post them tomorrow.

Red Sky

We took a quick trip to SC to a very special event. Aunt Kelly and Uncle Matt have been working several long months on the opening of their restaurant, RED SKY. Mimi and Papa helped drive the girls and I to be there for the Friends and Family Night to celebrate the grand opening. We ate delicious food prepared and created by Chef Matt Bolus. Congratulations Aunt Kelly and Uncle Matt we hope it is a huge success! Carley and Caroline were the very first kids to eat there. They traveled very well in the new van and are sleeping soundly in their beds. Carley enjoys all of the animals at Aunt Kelly's, but does not know when to leave them alone. We also enjoyed playing on the neighborhood playground. Everything was Carley sized! Caroline even enjoyed swinging in the baby swing and laughed and laughed!!!

Neurology Appt!

Caroline had a Dr appt at Neumors yesterday. They weighed her and she is a whopping 18 lbs. So we are getting chubby!!! We met the neurologist, Dr. Hammond. He was very nice and had read up on all of Caroline's medical info. He said she looked really good and was impressed that she was sitting and responding and playing patty cake and peek -a-boo. He asked if she ate solids and responded to pain etc....So he was impressed and said since she is still seizure free we do not need to see you except for once a year unless otherwise. So we rejoice in that news and are grateful that we have not had seizure activity. He said it appears she is normal and healthy inside. I said yes - as far as we know today!!!! He seemed pleased yet stumped by this disorder. So I wanted to say well we all are and we take It one day at a time and are thrilled with the daily discoveries along that way. We will go back to GI and nutrition in Nov as well as genetics to check on weight progress and the new formula. Caroline is plugging along!!! We appreciate all of the continued thoughts and prayers. I am going to scrapbook tonight at home with some new friends. Cam will take the girls to Chick -fil- a or ice cream while I crop!!!!

New Pictures of Caroline

Carley Discovers North Florida Fire ANTS!

Carley was playing in the back yard and stepped in an ant hill. She did not realize it and when she finally realized it they started bitting her all over. She had over 40 bites on one leg.

She is doing fine and we have event gotten her to help us put cream on her legs to keep them from itching.