Heart Strings....

So I just got of the phone with the genetics tech and they want to see Keagan again sooner than we thought... When we go up to IA City in Feb they are going to schedule her an appt then.. this will give them time to go over the echo of her heart and explain more to us about what she will be going through... which is great, I love to feel informed about her... the real reason I write this is because they would like for her dad and I to get the same testing done to see where/how/possibly why this happened to her.

This is a real struggle for me because I dont know how I could handle the news that it was my body that caused her these issuses. I know I could not have prevented it and I love her no matter what but those of you who know me, know that I already do not want more children at this point and finding out that it was my DNA will only strengthen my desire to not have more children.. Keagan is my whole world but the emotional side of being a mom with a child who has some form of special needs is extremely hard.

So I guess I am seeking advise... do I or don't I? Doing it could help us help her and not doing it is selfish... but not doing it just may save this mamas heart....

Just a January Update!

Ok time for a little update on Miss Keagan as she had a few appointments yesterday! After a long weekend I am not sure why I thought it was a good idea to schedule all her appointments in one day but I did. First we went for her 6 months check-up. She only gained a few ounces and no inches (I am going to have a little petite girl). The dr said she was healthy and happy! I had a few questions for her since we haven’t heard much about her ears since we went to IA City back in August! She said a lot of my questions should be answered when we return to IA City at the end of February because we are meeting with a team of doctors and she is now older so they can get a better idea of what to do next. Although this isn’t the news I wanted to hear, hopefully we will get those answers soon! She did also say that she would not be surprised if they recommended tubes (which would actually be a relief because we have struggled with fluid for a few months now) After a few shots she was pretty mad at me but I still had to run and get groceries before our next appt.

 

Our next appt was with her Audiologist Margaret. We went in for a recheck because the last time we were in she had some much pressure that she got negative readings on her eardrum pressure. This time we sat in the room and she was able to localize sounds a little better but not much. I guess this is still common at her age and especially with her already struggling with hearing issues. She also tested her permanent hearing and she PASSED! This was a relief! It is the same test they do in the hospital when they are first born, it tests her hearing at 3 different pitches. I should also say that she only passed in her left ear, she did not test her right. Then we went into another room and they tested her eardrum pressure and again we FAILED! One step forward and two steps back… I just don’t understand. This means she has fluid back there again or something is prohibiting her eardrum from vibrating the way it should. HOW FRUSTRATING! She said she would see us back in 3 months this time unless I felt she needed to be tested and hopefully I got some answers when I take her to IA City.

 

Next we met with her therapists… which include a early childhood educator and a hearing/speech therapist. This appointment just went over the action plan they are going to put in place for her. They will be visiting once a month to interact with Keagan and make sure she is where she needs to be. Their main concerns are her cognitive development and her speech development. These are areas where she already shows that she may need some help. Jackie and Ann are both confident that she is progressing well and said that I and her family are doing a great job helping her grow! It was soo nice to hear that I was doing a good job because although I know I am doing everything I can for her sometimes I still feel like I am failing her and I still have some guilt like I in some way could have prevented her from having these issues. I know that I can’t and could not have but it’s very disheartening some days.

 

When all was said and done yesterday we got a letter from the genetics doctor with a full explanation of her appointment and their findings. Do you know how hard it is on a mothers heart to read a 5 page letter of everything that is wrong with my beautiful little girl…

 

Well I guess that’s all for this update… we don’t have another appointment until Feb 6 when she has an EKG of her heart.

 

Until next time,

Ashley