Finally

After yet another night of little to no sleep, I finally called the doctor today to make an appointment. I woke up at 2 (after going to sleep after 10), went back to sleep at 3:30, was awake again at 4:30 and I've been up ever since. I've put it off for so long. We've had the brief conversations before about insomnia and I ask for whatever is new on the market-he gives it to me, I try it and maybe have a couple good nights and then it doesn't do anything. I've read two articles in the course a week about thyroid issues affecting women my age and I'm really wondering if that could be the problem, given some of the symptoms I have that totally match the ones in the articles. Anyhow, I'm going to demand blood work and we'll see what happens. I'm tired of being tired!

Back from Cincinnati

He's holding up pictures of his airway
I feel as though it should be about 6 p.m. or so-it's only 3:30. We were on the road by 5:30 this morning to head to Cincinnati for Evan's scopes. The good thing is that Wed. is their late start day in surgery so our 9:30 OR time wasn' t pushed back at all-they took him right on time. Poor little guy was soooo nervous this morning-he was crying and shaking-his teeth were even chattering. He was afraid he was going to die in the OR. That just about put me over the edge! It's all I can do not to cry right along with him. He was able to get himself together though by the time Mike took him in the induction room. They had him all situated on the table, ready to start the gas and in true Evan style, he made them stop because he had to go to the bathroom! They took back at 9:30 and we were talking to the drs. by 10. All looks good-his airway appears to have grown since Dec. '06 (thank you God) and his esophagus looked no different so there was no need to dilate it. We were on the road back to Columbus by 11:15. So, we're back to not really knowing why he's had some problems lately. He had his swallow study yesterday and nothing too abnormal about it-it does appear that his chewing is "disorganized" and there were some other terms thrown around-I won't bore you with it all. Bottom line is that we'll probably just need to go back to his speech therapist to work on some oral motor stuff. I do believe it probably all started with his 6 year molars coming in-it caused him to chew with the front of his mouth and then he just couldn't get it back to swallow it. His speech therapist is on the same page-probably alot of it due to some oral sensory issues we dealt with when he was a toddler. Anyhow, I'm relieved that there isn't any anatomical problem but still not ready to take on therapy again! Can I go to bed yet?

I'm really not a bad person....

There was an article in the Dispatch today about the WIC program and who it serves. Here's a quote that made my blood pressure go up just a tad-"To receive services, patients must show proof of residency and meet income requirements. Under federal law, U.S. citizenship is not required." I think I have such a hard time with this subject because we had to wait 18 months to get Medicaid services for Evan-here we were, U.S., law-abiding, tax paying citizens who had a very sick baby who qualified for home care services yet we had to wait. It just doesn't make sense to me. I had to write a letter to the editor-the 2nd one I've written on the subject. I wrote one before when there was an article about all the social service assistance certain refugees get when arriving in the U.S. I doubt I'd feel so strongly about the subject if I hadn't had to deal with all the red tape that we had to with Evan. OK, I'm done and I'm stepping off my soap box now.

WHAT???

A friend of Evan's was over the other day and we were discussing 1st grade and all the homework they have. I told them that I never had homework in 1st grade but that I didn't learn as much as they are learning. Evan's friend said matter of factly, "Well, you were in 1st grade in the olden days". Ouch.

Our song

I have been singing this song to Evan every day since he was born. Now he sings it to me. Kills me every time.

Sounds of Love

The following is an article from the hospital's monthly employee publication. We had applied for a grant for this program back in the fall and we got one of three that they were offering. Oh, and I came up with the name. :) Yes, I'm patting myself on the back a little bit!

The Neonatal Intensive Care Unit (NICU) environment can be extremely stressful for both babies and their families. Providing these young infants with a source of comfort and creating a distraction from unfamiliar sounds like beeping monitors is of great importance. Giving families an opportunity for involvement during a very unsure and difficult time is also a priority. The "Sounds of Love" program was created by several Nationwide Children's Hospital staff members experienced in working with babies in the NICU - a music therapist, an early intervention specialist and two parent advisors. The program lets families of NICU infants record themselves singing lullabies, reading children's books, or talking to their baby. A CD of the recording is played for the infant at appropriate times, providing an auditory connection to their family and comforting them during their hospital stay. Annie Urbanek, Music Therapist at Nationwide Children's, shared that there is both a desire and a need to encourage the connection between parents and their babies. Research indicates a 16 percent decrease in the time patients spend in the hospital when they participate in programs like this. "Sounds of Love is unique and provides a great resource for parents to strengthen the bond with their child, especially during those times where their schedule doesn't allow them to be at the hospital," said Annie. To create a Sounds of Love CD, parents are trained and encouraged to use calm, soothing voices. The CD is usually recorded in the family resource center and the cover displays a photo of the family. Shannon, whose son Isaiah is a patient in the C4 NICU, realizes how stressful it is for a baby being away from his or her mother. "You know that your baby always hears your voice when you're pregnant, and when they are born prematurely, they are exposed to many strange sounds in the NICU. When Isaiah hears my voice recording, his stats improve and he physically calms," said Shannon. In a situation where most everything is out of their control, many parents have commented that creating this personalized CD makes them feel like active participants in their baby's care and development. Often they have difficulty connecting with their infant when they are born premature or sick because they are not able to hold and care for their baby as they would a typical newborn. Sounds of Love received a grant from the Development Board to purchase many items, including a CD recorder and player, blank CDs, a digital camera and low-decibel pillow speakers. "There's no worse feeling than leaving your baby behind; but at least you can leave a part of you - your voice - with your baby. It's the next best thing to being there every second," said Shannon.

Just some stuff

I pulled out some pictures from my 25th birthday to share with friends and decided to take the plunge and share SOME of them here. Trust me, you are not nor will you ever see all of them! A radio station in town had a big beach party and my friends Shellie and Vickie and I decided to go. Shellie got us a room at a hotel so we wouldn't have to drive and trust me, we were in no shape to do much of anything after the evening was over! Yes, that's Danny Bonaduce in one of them and I have no idea who the person is in the picture w/me in the lovely white sunglasses.

Come on

Was I not the cutest baby you've ever seen? In anticipation of my big day tomorrow, Evan wanted to see a picture of me as a baby. Seeing that I'm the 3rd child, there aren't many baby pictures so this is the best I could do. Evan looks a little bit like me, don't you think? Click on the picture for a better look.

Just a video

Here's a little video of Evan's birthday present from January that we finally put up yesterday-we actually saw the sun here in Ohio!

Yes, I had a pity party

Obviously I had quite the pity party for myself yesterday. Not saying I'm over it but what can you do? What I do is just ask God every morning to give me the strength I need to get thru the day.

Evan's pediatrician thought it was a good idea to start him up on Pediasure again. He's not gained a significant amount of weight in this past year and she was concerned about that combined with what we're currently going through. I know he started on it when he was about 1-both by bottle and by feeding tube-but I can't really remember when we stopped it. What I do know is that he would only take it by bottle, not a cup, even though he would drink other things out of a cup. I can say he had a bottle for a long, long time! Anyhow, I've been so afraid that he would not drink it now at age 7. He's not thrilled with instant breakfast and that's our only alternative to Pediasure. So, I put some in the fridge last night and prayed that he would drink some this a.m. He was ready to try it and he did not make a face or say yuck or any of the things I was afraid of. He just wondered if I could put Hershey's syrup in it which I did and he said that made it much better. I'm so grateful that we'll be able to get that in him without hassle.

I spoke with Cincinnati a couple days ago and he's scheduled for both an endoscopy (scope of esophagus) and a bronchoscopy (scope of trachea) on April 23rd. I was thrilled that they could get us in so soon.

I'm posting yet another picture from my dad's collection. This was taken just a couple days after we brought him home. He wasn't really happy about being here with us-it took all of us a few days to adjust to being at home.

I Wish

I wish that for one day I could experience what it's like to be the mom of a child who has absolutely no medical issues. A child who doesn't get asked if he's got a sore throat or laryngitis because of his voice. A child who can scream and make noise like his friends. A child who doesn't have scars all over his body. A child who can sit down and eat any type of food and has always been able to and whose mom isn't scared each and every meal that something will get stuck in his esophagus. A child who doesn't need to get an upper GI and a swallow study. A child who doesn't have to get scared because they know they are going into the OR in the coming weeks.

My heart just ached this afternoon when he told me he was sorry for having eating problems. There are times when I get very frustrated and I have no doubt that he picks up on that. Of course I felt horrible. I told him that he had nothing to be sorry about and that we would just keep trying to figure this out together. I wish I could just take all this away for him.

I have to wonder though that IF I had a little 7 year old boy who hadn't gone thru all of Evan's stuggles, would he be as sweet and caring and compassionate and loving as he is? Probably not.

I just had to share this picture-one of my favorites that was of the pre-digital age (at least in the Slifer house) that my dad scanned. He was almost 2 at the time.