Hearing Aids and Progress Report

Well we officially have cute pink sparkly hearing aids now. I have a picture to post but I still have not gotten that little attachment for my camera yet...so until I get to my parents house to upload it...it will have to wait. The minute Cameron got her hearing aids put in she started talking up a storm. She was smiling and talking more than I have ever heard her. However, once we got home...Seth and I realized that hearing aids are more complicated than we thought - she started to get feedback in her hearing aids. So, we checked with Duke and we are hoping that we have the problem fixed. Last night was one of the coolest nights ever - Reagan was already asleep and Cameron and I were just playing and talking - I would sing and she would coo back - it was unbelievable to think that my little girl can hear all that I say now. What a blessing. We go back in 2 weeks to have them check out her hearing aids one more time and then we are set to go.

Yesterday at the hospital the girls had their checkups. They saw the eye doctor and we found out the Cameron's hemorrhage is still in her eye - it does not appear to be causing any harm but it is still in her eye so we have to watch it. We also found out that Cameron is a little nearsighted and will probably eventually need glasses - which we already knew because it is in her genes to need glasses anyway! Reagan got her hearing checked yesterday and she has normal hearing. The girls were weighed and Reagan weighs 11 pounds 9 oz. and Cameron weighs 10 pounds even. They are doing so well and are finally able to be charted on the growth chart. Cameron is in the 3-5 % and Reagan is in the 10 - 25%. We are hoping that they will continue to grow appropriately. Cameron is officially off of the heart monitor. We are hoping that the company will be setting up an appointment soon to come and pick it up. Cameron did not get tested to see if she has outgrown her Adrenal Insufficiency (cortisol deficiency). They said that they assume that children need it for their first year and after that you discontinue the need for it. I have decided that the girls absolutely hate going to Duke. Every time...and I do mean every time, that we go to Duke one of them has a major accident. Yesterday it was Reagan's turn. She ruined her clothes and then proceeded to christen the doctor's office room twice while we were changing her! I guess that was her way of telling us that she was done with being at the hospital!

The girls got out for their first visit to church last Sunday. What a crazy but unbelievable day. The girls behaved so well! I was so excited at how well they did. We will see if they continue to do so well now that cameron can hear so much more of what is going on! We hope to be able to upload more pics soon. This month has been a good month and it is only getting better - Aubrey will turn 2 on the 31st! I can't believe that she is such a big girl!

We're Getting There!

Well, the girls are finally starting to act like what I could consider "typical" babies...well, mostly. They have needed a little bit of help. The last couple of days have been spent working very hard to get them on a real predictable schedule in hopes of encouraging them to sleep longer at night and being able to put themselves to sleep should they wake up in the middle of the night. Before we began the past week the girls have been very sporadic in their sleeping and we would be lucky if they slept all of 20 - 30 minutes every three hours or so. AND those few minutes were sleeping while being held. At night the girls were waking up every three hours and one night Cameron woke up every 1-2 hours. So, by the end of this past week I said ENOUGH! We must get some sanity...and what I meant was really I must get some sanity! So, we are on our way and the girls are doing well. They have been sleeping for almost an hour in their own beds (not being held) every three hours. And the best part is that they are sleeping at night - Cam is the champion sleeper so far with 7 hours last night! They are very happy and so is Mommy!

The girls are changing so much and I can't wait until this week is over and we can see what the doctors at Duke have to say. On Tuesday I take Cameron to go and get her fabulously flashy hearing aids! I am so eager to see how differently she will react to our house and all the sounds that she hears! She already is cooing and laughing and getting her voice (which is very loud, I might add). Cameron was weighed on Friday and she is 9 lbs. 12 oz. She has had great weight gain over the last few weeks. We are now really working on her upper body strength and head control. She has spent so long arching that it is hard for her to focus and make her body move the other way. So, we are putting her on her tummy as much as possible - at the beginning she could hardly stand a minute or so and now we are up to several minutes. Baby steps I say. Reagan has grown so much...although we don't know exactly how much yet...we find out on Thursday at Duke. Thursday is their clinic appointments where they will see the main physicians, speech and physical therapists and the eye doctor. I also have to ask to have Reagan's hearing retested since her twin sister is hearing impaired. Reagan is talking like crazy and smiling so much. She is also drooling a ton..she has to get changed between almost every feeding...mainly because of the drool! I keep looking for tooth buds in her mouth but I don't see anything yet. Reagan can roll from her stomach to her back and is working on back to stomach. She loves to play on her belly. The girls are also learning to interact some with each other. The other day they were on their sides with each other and Cameron took Reagan's hands and starting eating them while Reagan just smiled and talked to Cameron. It was amazing!

Beginnings and Reflecting

Today we met with the Beginnings support person - a free service that is provided to parents of hearing impaired children whose sole purpose is to help parents to advocate for their child and to tell them about services that are available. Today we decided to go ahead and make a speech language referral for Cameron to be evaluated with her hearing aids. This will tell us her strengths and weaknesses. One of the things that he commented on was how well Cameron focuses and watches what you are doing when you are talking - he said that it was a very good skill and he was very impressed. In the meantime, Seth and I have a lot of praying to do as we will have to choose a form of communication for us to focus on using with Cameron. I have mixed feelings because I, of course, want for her to be able to learn to talk and produce normal speech sounds and for her hearing aids to help her to achieve as close to normal hearing as possible. However, realistically, I understand that there are times that she will not be able to have her hearing aids in...so we also, I feel, need to have an alternate plan.

Both girls are doing so well. Lately I have been doing a lot of reflecting on my pregnancy, the day the girls were born, our NICU experience and have been quite emotional when I let myself really think about all that we have been through. Not in an I feel sorry for myself kind of way but in an I stand in awe of God's mercy and goodness kind of way. I found myself thinking of these pictures and comparing then to now. I am so thankful for all of our blessings...but especially the three that are sleeping soundly even now as I am typing.

December 26th, 2008

May 2009

weights

Cameron - 8 lbs. 13 oz.
Reagan - 10 lbs. even

Tiny Blessings Getting Bigger

We are growing! Both girls are over 8 pounds (we will have exact weights on Friday) and Reagan is already outgrowing her NB size onesies. We are in size 1 diapers. I can't believe how much they are growing. But coolest of all is to see how much the girls change from week to week in their verbal and developmental milestones. Reagan is beginning to really laugh (not just in her sleep). Both girls are really starting to try to talk and show so much expression. They love to watch things and try to grab at toys. Cameron's visual skills are amazing. She will follow you wherever you go - she always wants to know what is going on. Reagan wants to sit up so bad. We will lay her down on a boppy pillow or lean her up on the couch and she spends the whole time pulling her head up and crunching trying to sit up. Both girls are doing well with head control. We have not been able to do as much tummy time as I would have liked because of the reflux but we have been slowly building more and more into their day. I am trying to get them to entertain each other by facing them together during tummy time. The reflux seems to be doing better but BEST OF ALL - THEY ARE FINALLY SLEEPING!!! Not just for a few minutes but real -6-7 hours sleeping. Okay...wait let me clarify - they did it once. I am not sure if it will continue or not but we will take it. They woke up so happy this morning and I firmly believe it was because they finally were beginning to feel rested.

We meet with the Beginnings people on Tuesday of next week to begin to hopefully line up therapies for Cameron. I am also hoping to find out more about our family learning sign language and about different communication options that we will have. I have been so blessed to be able to talk to so many parents with hearing impaired children that have given me so much encouragement and advice and invaluable information. Thank you to all of you.

This next month brings many milestones for our family including - a wedding anniversary, Aubrey turning two, and Cameron getting hearing aids. I am also praying that it will include Cameron being taken off of the heart monitor and finding out that she has outgrown her cortisol deficiency. Thank you again for all of your prayers and support for our family.

One More

Here is one more of the girls - it is one of my favorites because it shows their personalities I think.

Photo Shoot

A friend of mine who is a photographer took pictures of the girls - I love Lisa, I love these photos! Here they are!