Due Date Anniversary

One year ago today was my actual due date. When I look at Abigail and Elizabeth it is so hard to believe that this time last year they were still in the hospital. Today I can say my girls are officially 1 year old. They are doing a lot of the things a typical 1 year old baby can do, and because of that I feel totally blessed.

 Here is a cute picture that Abigail's primary nurse sent me 1 year ago today.

Queen Elizabeth

When Elizabeth was in the NICU she would have really dangerous bradys. She  would turn blue and her stats on her monitor would go way down and alarms would go off. The nurses would run to her bedside and have to stimulate her and turn up her oxygen. That was a very scary time. I remember just standing there and feeling hopeless. I am so happy those days are behind us. 

FYI- the NICU nurses would call her Queen Elizabeth because she made them all run to her. She is still the queen. 

 

Can you get your money back?

This week I took Elizabeth to see a new specialist at Kennedy Krieger. The doctor is a Physical Medicine doctor. The doctor was really wonderful and looked her over really well. He works with Elizabeth's orthopedic and they will even do appointments together. This information was music to my ears. Two doctors and just one appointment. :) 

The appointment was to assess her CP and to see what suggestions he had to help with her range of motion. He said that Botox could be in her future as well as a surgery on her calf muscle, but no real timeline when that might happen yet.

He also believes that she is a candidate for constraint therapy, so he has referred us to the constraint therapy team at Kennedy Krieger. I didn't even know such a team even existed, but we will be seeing them soon. 

I really don't want to complain, but here I go just because I need to get it out-I was told appointments will slow down but that was bologna! It seems every time I leave one appointment we end up with a new specialist to see and more appointments! Ahhhh!  Okay I vented now I can move on. :)

Alright back to the appointment.

So the doctor then looked at Elizabeth's new orthotic and literally said "Do you think you can get your money back?" He really didn't like the way it was fitting her so he wrote up a new script for a new one. I am now in communication with the old orthotic place to stop the claim to insurance so I can take her some place different. Of course they want an opportunity to fix the old one so we will see what happens. I will keep you all posted on how this all works out. Keep your fingers crossed I don't have to put up too much of a fight! I have wonderful insurance. It is probably the best around, but you know how it is, they don't like to make it easy on us. 

March of Dimes

Please make a donation to March of Dimes. My family will be participating in the walk in May. All donations go towards research that helps preemie babies. http://www.marchforbabies.org/mbfturner

Appointments This Week

The next few months are once again filled with lots of appointments. People keep saying they will slow down and I keep waiting for that to happen. 

 This week I will take Elizabeth to a new specialist at Kennedy Krieger. The new doctor is a Physical Medicine doctor who works in the rehab center at Kennedy Krieger. He will determine if Elizabeth will need Botox and/or possibility need constraint therapy. Constraint therapy is a technique used to help encourage someone to use their weaker arm or leg by blocking the use of the stronger arm or leg. I am very interested in seeing what the doctor thinks.

On Thursday I will be headed to Baltimore again, but this time with Abigail. It is time for her 3 month check up with her Pulmonogist. Abigail is still using oxygen at night and to be honest it's a big pain in the neck. She fights us when we put it on and she takes it off on her own now. Dan and I get up several times each night to check and make sure it is still on and 99% of the time it's not! 

I will let you all know how they go! :) 

The Preemie Parent Exchange

There is a really cool group you can join on Facebook called The Preemie Parent Exchange. The page is like a Craiglist for preemie parents. Parents can post extra supplies they have and parents can also request supplies that they may need.  

NICU Follow-Up Round 3

I took the girls to their NICU Follow-Up appointment yesterday at Kennedy Krieger. It always makes for a very long day. We left the house at 8 AM and didn't get home until 3 PM. 

The team looked the girls over and I wasn't at all surprised that they both continue to have a developmeyal delay due to their physical abilities. The girls are not really up on their feet yet and they still struggle with going from the floor to sitting by themselves. Despite therapy 5 days a week the girls still are a little behind. They are however very happy with how well they are doing otherwise. Their nonverbal skills are right where they should be and Abigail wowed them with her verbal skills. They would like Elizabeth to say a few more words, so we will continue to work on it.

They are a little concerned with Elizabeth's right foot (not her CP side). They requested that I move up her orthopedic appointment and suggested we speak to her doctor about getting an orthotic for her right foot as well. I went ahead and moved her appointment up from April to February. They also suggested that I take Elizabeth to a Physical Medicine doctor at Kennedy Keiger. The Physical Medicine team is a part of the rehab team. Some people with CP benefit from Botox so I would discuss that with them. We will go to that appointment in March, but we are on the cancelation list so it is possible we can get moved up. 

On the way home my mom asked me how I felt about the appointment and the truth is nothing surprises me anymore. I take it with stride and one day at a time. I knew from the beginning that they were born severely premature and the possibility of them having a developmental delay or other issues was high. I love my girls and we will just keep trucking along. I an confident that the girls will continue to make progress and with time they will catch up to where they should be. We will return to NICU Follow-Up in 3 months. 

Here are a few new pics of the girls. 

Love This

Christmas Dress

Sorry friends these pictures are so late. I just had Dan upload the pictures from my camera to his computer. Check out how cute the girls are in their Christmas dresses. I got the dresses from Target. I took the pictures myself because the girls can't visit a photography studio yet. One of my many jobs in life was a photographer at the store The Picture People. I guess those skills came in handy.

Elizabeth's Orthotic

Elizabeth wears an orthotic when she is standing and playing in her walker now. It is her first orthotic for her foot. We see her orthopedic at Kennedy Krieger in Baltimore, but her orthotic was made in our area. So far she does not seem to mind it. It is her first foot orthotic of many more to come in the future. The purpose of the orthotic is to try to keep her foot flat when she stands. Her cerebral palsy causes her to curl her toes in. It will be difficult for her to learn to walk, but her doctors are confident she can do it and I know she WILL do it! She is one strong and determined girl. I think she takes after her mom. :) She continues to receive physical and occupational therapy Monday- Friday. 

When she wears her orthotic she has to wear shoes. Here is a tip for moms who may have to deal with this in the future... The shoes will have to be two different sizes. Her true shoe size is a 3, so she wears a size 3 1/2 (to give her a little room to grow) on her right foot. To accommodate for the orthotic we had to get a size 5 1/2 extra wide for her left foot. We bought her shoes at Stride Rite. 

If you need to buy two shoes because of a situation like ours, Stride Rite will actually give you 1/2 off one pair of the shoes when you buy the two pairs. This will help save a little on the cost. I am planning on calling our Health Insurance company too to see if they will reimburse me for any of the cost since the shoes were bought for a health issue. I will let you know what they say when I get around to  it.