Speech Therapy

It has been a busy week. I really felt this last week that I needed to get Carter into a speech therapist to help him with eating. I called and got this arranged with the pediatrician who referred me to the Primary Children's Medical Center outpatient rehab center conveniently located not far from our house. After leaving a message on the rehab center's message center about getting an appointment I sat back and waited for a return phone call.

The next morning they called and said they had a cancellation and could I come in the next day - Wednesday morning. The appointment happened to be the perfect time as Ashleigh was in preschool and Parker was in school. I was so excited and told them yes in a hurry. I was then told that sometimes it takes up to a month to get in to see a speech therapist. I felt so blessed that this worked out for us in this way! Heavenly Father does indeed watch over us and bless us when we are in need of help.

Carter and I headed to the outpatient rehab center and met with Helene Taylor. She is so awesome. She was floored at Carter's size considering he is a "heart baby." She watched him try and eat from a bottle and was very encouraging. She gave me some pointers and some exercises to do with his cheeks to help him get a better grip on the bottle and he is doing awesome. She is going to send us up to Primary Children's to do another swallow study because a newborns mouth changes between birth and six months. She just wants to make doubly sure that he is not silently aspirating before we go through all this therapy. The encouraging news is that she thinks he will be able to get the hang of it with a lot of practice and patience and that means we can eventually get rid of the feeding tube. Yeah!!

She told me to get in touch with Carter's dietician to see if we need to cut his calories down even more because he is getting so big. Ideally he should weigh 20 pounds at 1 year of age and with him being 6 months old and 16 pounds - we will probably surpass the 20 pounds before 1 year. I haven't ever been concerned about my babies being chubby (because chubby babies are so dang cute) but evidently this will play into his mobility because of his low muscle tone. If he gets too big it will be harder for him to hit milestones - so I guess he can join millions of other people (including myself) and start watching his weight - ha!ha!ha! That just sounds so funny.

On a different note - many of you know that we belong to a support group called Intermountain Healing Hearts. This is a support group for families dealing with heart issues in their children. The members who belong to this very special group have so much knowledge and understanding. They have been so welcoming to us and we feel we have found several people who understand what it is like to have a baby undergo open heart surgery, spend months in the hospital, deal with oxygen, feeding tubes and all sorts of issues that most people do not understand. It is so nice to have people who can offer advice, help us through rough times and rejoice with us in happy times.

One of the sweet heart babies, Brooklyn Bailey, passed away into the loving arms of Heavenly Father on Saturday. Her death has made our family think about how lucky we truly are to have Carter with us still. She was a valiant angel who fought hard to stay with her family, but in the end it was not the Lord's will that she remain here on earth. She has returned to heaven after 2 months on this earth and is now perfect and will be waiting for her family to join her. Even though I have not personally met the family, I feel like a death has occurred in a very close friend. Brooklyn was kitty corner from Carter in the PICU, but I didn't have a chance to meet her family. Please pray for the Bailey family as they go through this very hard trial.

We have also watched two other babies go through the miraculous journey of receiving a heart transplant. They are both home now and doing well. We are truly blessed to live in this time and age when so many things are possible. There are miracles happening everyday.

When I think back on the last six months, I can't imagine my life any different. It has been a wonderful journey filled with tears, joys and feelings that cannot be put into words. Heavenly Father knows each one of us and is mindful of our situations. I am a different person than who I was six months ago. I will never be the same. Our family will never be the same. Carter has been a miracle from the beginning and continues to amaze us everyday. We can't imagine life without him. We are truly blessed.

Thank you for your support and prayers!
Kristi and Alan