Happy Thanksgiving!

I know, I know. Thanksgiving is over. But, I thought I'd stop in and say that Erik is still doing okay. He is having problems again with weight loss and his food coming out of his nose, but, the doctors don't seem too concerned, which annoys me. Why is it so hard to get him the appointments he needs? There are so many unanswered questions concerning his health, but we have to wait until he can get his appoinments. Other than that, Erik is doing pretty good. Erik tries to roll over, he giggles a lot and jabbers. On Thanksgiving Day, Erik slept most of the time in his crib, which ended up being a good thing, because someone came over who showed signs of having the flu and Erik never ended up being near her. I wish some people would think before they went to my brothers house. Having a preemie living there makes us want to protect him from illness, even the most basic illness can send Erik to the E.R. Erik is growing lengthwise though, he is now 29 inches long! He weighs about 16 lbs. I love the little guy:0)

2 yrs. old and growing!

Erik is doing real well right now. He is down to only 3 medications from 6. He is alert and happy most of the time now and he hasn't been to the hospital in quite some time. I don't know how much he weighs right now, but he has gotten chubby. He wears clothing sizes 6-9 mos. now and 12 mos. (Depending on who makes them). Erik now scoots off his diaper when we are trying to change him and he is trying to roll over. Maybe soon he will master that. He laughs and smiles A LOT! He is a joy and blessing and I am so glad God chose us to be his family.

Trying new things.

Erik tested negative for Rett's syndrome! Yay! That brings us back to square one, but that's okay. The doctor would like to try and control Erik's seizures with diet and get him off a lot of his meds. That would be wonderful if that works. Erik has had several days when he is more alert and that is so much fun. He smiles and looks you in the eye when he is alert. I tried him in the Bumbo seat for the 1st time and he didn't like it the 1st time I put him in it, but on the 2nd time, he looked at me and smiled. Erik truly is our little miracle boy! He is loved.

Praying for Erik.

Erik has been going through some tests. We want answers as to why he is so delayed. The scary thing is, some of these answers could bring us to tears. If he has Rett's Syndrome (a strong suspicion) then his life span would not be super long. That brings me grief. What I have to do is remember that he has not been diagnosed yet. I often wonder if just the infantile spasms and epileptic seizures are causing all of his delays. Poor little guy goes through so much. Erik turned 2 yrs. old on March 1st. He does not sit up, roll over or even hold his head up very good. As of last week, he weighed 16 lbs. 4 oz. Not very big for a 2 yr. old. But, so much bigger than his tiny, 1 lb. 3 oz. size. I knew that we'd have to face a lot with him being a micro preemie and all, but I never realized it would be this hard. We love him so much and he brings so much joy to his family. The thought that we might lose him is just devastating. But, I will try and focus on the positive. He is alive right now and he smiles and coos. He even laughs out loud which makes me laugh because it is so cute when he laughs. He's my little sweetie. God certainly gives me an extra dose of love for the little guy. I am praying that he does not have Rett's Syndrome. I pray that he lives a long and happy life. I love you Erik! Love, Aunty Karen

Erik, as you know, spent his birthday in the hospital. He did get released at 8:30 that night though. The hospital provided him with lots of presents for his birthday, so that was nice. So, here are a few pics from his birthday.

Happy 2nd Birthday Erik!

Today Erik turns two! Our little miracle has made it 2 years on this Earth. I am so thankful to the Lord that He has blessed us with this special boy. Unfortunately Erik had to be admitted (again) to Children's Hospital yesterday after suffering 4 epileptic seizures in a row. Poor baby. So, today, on his 2nd birthday, he is in the hospital. I hope he gets released soon so he doesn't have to spend all of his birthday in the hospital. Anyway, I am just putting this entry in to say HaPpY bIrThDaY eRiK! I love you more than you'll ever know!

More doctors...

Erik has had a few more doctor appointments. He weighs 14 lbs. 7 oz. now and is 26 inches long. This is big compared to his birth weight, but small for a boy of nearly two years old. He has been tested for Edwards syndrome, and we are so happy to say that came back negative. However, the doctor mentioned the possibility of Rett's syndrome, which is rare in boys. Most Rett's syndrome cases are in females. I looked it up and Erik has 95% of the symptoms of that. But the doctor said to not put the cart before the horse. So, we are just waiting to see if he has Rett's syndrome or not. If he does, then at least we have an answer, if he doesn't, then we will have to continue to try and figure it out. Rett's syndrome is a genetic disorder and it is also considered a severe form of autism. No matter what the results are, we love our miracle baby! He is precious and he has a purpose in life. He brings us joy! I love my little buddy, Erik! Love, Aunty Karen

Big boy!

Erik is gaining weight again and weighs nearly 14 lbs! He is eating baby food a little bit at a time right now. He seems to be doing well with it. It's hard to believe that Erik will be 2 yrs. old on March 1st! (He is a Leap Year baby). Erik still doesn't do much physically. But he certainly brightens the life of his family. We all love him so much! Such a sweet baby boy. I can't wait to see what he will accomplish in the future. For now, we are enjoying his sweet babyhood. We love you Erik!