August 2012

Preston: In June we took Preston in to get tubes in his ears. Within two weeks of having the tubes he has started babbling more and is started to move around a lot more. It is now August and Preston is doing an army crawl and rolling to get where he wants to go. His therapist has suggested that we get him tested for Cerebral Palsy (CP). The therapist wants to rule out all the possible reasons why he is delayed in pulling himself up, sitting up, and crawling. He also has a hard time bearing weight in his legs and keeping his legs straight. Due to his issues with bearing weight in his legs he now has a "stander". I will post pictures of Preston in his stander in the next post. We have an appointment for him to get test for CP on October 26th. We get to see a CMV specialist on August 22nd. We have to travel to the Levine's Specialty Center in CLT. Preston seems to be on track with his mental development. He is picking things up to feed himself, playing with toys, looking for toys that he drops, and he moves toward things that he wants. He doesn't talk as much as he should but I feel that is because he couldn't hear clearly for 6 months. Now that he has the tubes he is doing much better. Lily: Lily is a non-stop talking machine. She is very expressive and animated in her story telling. She loves to sing, dance, read, practice her writing, play doctor, and entertain her brother. I have never seen a child love their younger sibling as much as Lily loves Preston. She dances for him, sings to him, reads to him, kisses him, and always says, "it's okay, boogers". She is possibly about to start back to preschool in September. Lily loves to learn and she misses going to school and being with other kids her age. I try so hard to keep her socialized. We go to the library, park, science center and have many play dates. I will miss her during her hours at school but I know that this is something that she needs. This summer we have spent a lot of time with kids her age and older. The older kids have allowed her to learn more and I love that! We did science experiments and went to the pool a TON this summer. Lily is growing up so fast and it is hard for me to believe that she will be in school in two years. Liz (Me): I have had a very hard time deciding what to do with my future. I have been unemployed for a year and two months. I have never been unemployed for this long. I have worked since I was 15 years old. I find pride in the work that I do. Over the past year I have been trying to start Wise Owl Family Care. I have had many part-time and drop-in clients but now that kids are going back in school I am left to make a hard decision. I want to stay home to be with Preston and Lily. I feel that I will never get these young years back. Also, Preston's therapist said that it would be best for Preston if I stayed home to help him. I am started to run out of savings and I do not know what to do. I know that I will figure it out, I always do. I have to make the decisions that are best for my children and myself.

So many Doctors....So little time!

The other night I decided it was time to read my last blog entry and start blogging again.  I sat down and started to read the words that I wrote and tears started to roll down my face.  Did I really write those words? The sequence of events were so unexpected and it all happened so fast and then the days...they felt like forever yet they flew right on past.  All the days were running together and I could not focus.  I am not sure how I wrote a 12 page paper in 2 hours.  I am not sure how I managed to hold it together for Lily and pump all day and night for Preston while he lay helpless in the NICU.  I am not sure how I was even able to concentrate enough to drive because I was sleep deprived from sitting up all night with Preston and hanging out with Lily during the day.  Yet, that all too well known phrase, "God never gives you more than you can handle" was screaming in my ear if I ever questioned why this happened to us.  Preston is a fighter and came home after 16 days in the NICU.  I can tell you that 16 days doesn't really sound like a very long time...but it feels like forever when you sweet little boy is laying helpless and fighting off a virus in the intensive care unit. 

Preston was born on Novemer 13, 2011 weighing in at 5 pounds and 15 ounces.  He was in such distress that he had a bowel movement while in utero and was swimming in his meconium.  When he was born he was stained from head to toe..he looked awful.  He was born with CMV, Pulmonary Hypertension, he had a thickened heart muscle, Pneumonia, and he had petechiae all over his body (busted blood vessels that look like a rash)

It is amazing that in 16 days this small miracle overcame all of these obstacles! Preston has amazed us all.  The CMV can possibly create vision, hearing or development issues as he gets older.  As of now he has passed his hearing test, his Brain Ultrasound came back normal, and the Optometrist said that he does not have any signs of CMV Retinitis which is great! The Cardiologist said that his heart muscle has decreased in size and that the Pulmonary Hypertension is completely gone! He suspects that the heart muscle will be completely normal by the time Preston is 6 months old! I know that God listed to all of our prayers and I thank you all for praying for our family!