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!

Hospital Visit Today

Today ended up being a rather long day. So here is the short version of what we found out:

1 - Cameron's hearing test was redone and it was similar. They feel that hearing aids will give Cameron good amplification in her right ear for her to hopefully resume normal speech language development with the help of a therapist. They don't know whether they will ever be able to amplify enough for her left ear to hear speech sounds but she may be able to hear environmental sounds like loud sirens, horns, cars, etc.
2 - They want to recheck Cameron's ears again in 3 months to make sure that she does not have degenerative loss in her ear and if it is getting worse...Cameron may be a candidate for cochlear implants. Right now that is currently off the table.
3 - We picked out cute pink hearing aids and a sparkly ear mold so that she will look girly and fashionable. We figure - its not like people won't be able t tell that she has hearing aids so we might as well make them look cute!
4 - Cameron's reflux has been getting pretty bad again. So much so, that her physical therapist insisted she see the doctor yesterday at the last minute. At that appointment we found out that Cameron has resumed good weight gain and is now 8 lbs. exactly. We also found out that we need to increase her medication but that if that does not stop then we will begin adding cereal to her. We are also hopeful that the monitor may be going away within the next month or so.

I think that is the short of it. We were also told by a speech person at the hospital that it might not be easy to get Cameron started with speech therapy. My prayer is that she is wrong. We will be meeting with different folks to hopefully begin to set that up. Cameron's hearing aids should be in in about a month - so hopefully she will be hearing all of us soon.

Our First Illness

Well, it has struck...we think. A few days ago I started sneezing and then my throat started to be a little sore. I had heard that strep was going around...so I decided to run to urgent care and get a quick test...negative. But upon examination...my throat had red bumps that are symptomatic of strep throat. So, they are sending my test up to the lab and I am now on antibiotics. However, I cannot have any close contact with any of the girls for the next 24 hours - does anyone know how unbelievably difficult that is going to be??? Very! When they are crying, I can't fix it and it kills me. The good news is it is only 24 hours. The doctor said that it could just be allergies but because of the bumps we are going to do the medicine just in case. So, the plan is to sleep like crazy for the next 24 hours so that I can finally relieve Seth tomorrow night and let him sleep all night. I just pray that the girls do not get it! I am so scared because a) they are preemies and more at risk for illness and b) Cameron's immunity disorder. I pray that none of the family gets sick. We all depend on each other. Please keep us in your prayers. We go this Tuesday for Cameron's ENT appointment and to get fitted for her hearing aids.

Answers to Questions

1 - Why is the PT saying "don't let Cameron stand!" - She says that it can encourage those muscles to stay tight instead of being loose and relaxed which can lead to muscle tone issues. We are allowed to let her stand once she starts pulling up on things - which is quite a ways away. She says that if we let her do it too much and those muscles get too tight then she will walk on her tiptoes when it comes time to walk...which we do not want! I am actually getting more and more concerned about Cameron's muscle tone because she can be so stiff and rigid...especially during feeding - which is probably part of the reflux. I have called the PT at Duke and am having their developmental therapist assess her this week to see if I am completely overreacting or if we do have reason to be concerned.
2- What type of hearing loss - the audiologist thinks that it is sensorineural hearing loss but that is a educated guess...we see the ENT to confirm this next week.
3 - Sign language - No we haven't started sign. To be honest we have heard so many conflicting things and I have been waiting to hear from the people from Beginnings (local hearing impaired resource from NC school for deaf and hard of hearing) to see what they would recommend. I am trying to read as much as possible and trying to keep talking to Cameron - which is what the audiologist said to do. Cameron still reacts to us and will smile and makes my heart soar when she tries to talk. I know that she can hear some things...it is just very limited I think. She said that it is imperative that Cameron see us react appropriately to her needs so that when she can hear she can put them together. How soon should you start sign? We are only at the smiling and cooing stage - should we begin already if we choose to do it?

Marilyn, it seems as if you are very knowledgeable on the subject of hearing impairement - any information or advice you have would be wonderful. I would love for you to email me at lele307@gmail.com

Cameron's Appointments

The eye doctor visit went well this week. The hemorrage does not seem to indicate that anything is leading towards retinal detachment - which we are extremely excited about. It is still there but has spread out, allowing the doctors to be able to look under it to be sure. Both girls will be going back to the doctor (along with their other clinic appointments) in July. Cameron's next appointment is June 16 for all of her hearing aid stuff. I am so thankful to have been turned on to a free resource for parent education for parents of hearing impaired children. I am in the process of signing Seth and I up for a distance learning course.

The girls are doing well. We are still having the ups and downs - good days and bad days...but all babies have those - ours are just times 2! They are wiggling and squirming like crazy and both girls are now cooing and interacting with you - those are the most joyful times of the day! Reagan is working hard on rolling - she wants to so bad - you can almost see it on her face. Meanwhile, Cameron would rather try to stand (even though we have been given strict orders to not allow her to do that from the physical therapist so we do our best to keep her from doing so). Both girls love their swings and love their play gyms...most of the time. But most of all they love Aubrey. She can bring smiles that none of us can get. She loves to come up and say "tickle, tickle" and the girls just smile so big for her. They all love each other very much!

Apnea Monitor

Ah the monitor. I fear that it will be staying with us a bit longer than I wanted. For some reason in the past two weeks it has gone off for apnea and it hasn't done it since she has been home. I think that it is because Cameron is sleeping so soundly but I don't think the doctors will let her come off until they stop. Please pray that things would calm down and that she would be well enough for the doctors to take her off of the monitor or if that is not going to happen that we would see the cause for the apnea that she has been having! I can't help but wonder, though, how many of us have apnea episodes when we are in a deep sleep.

Cameron also has her eye appointment tomorrow to check on the hemorrage in her eye. I pray that it has healed up all on its own.

Thanks again for keeping our family in your prayers.