Lung issues

Well, it seems that Ethan's lung issues are finally behind us. He has been healthy for almost 2 months now. We did his swallow study and found that his liquids need to be thickened to a milkshake consistincy. We were previously only thickening them to a nectar consistincy. He has also been taking zantac for acid reflux. I am praying for a healthy winter!

Yesterday me and another mom from our local support group did a live web radio interview about abortion and Down syndrome. Here is the link. http://www.issuesetc.org/podcast/317091509H1S1.mp3 Check it out if you get the chance.

Feeling a lot better....

Ethan saw the Pediatric pulmonologist on Thursday July 9th. He did some blood work to check his immune system and also did a CBC. He looked at Ethan's most recent 2 chest x-rays and said that the x-rays didn't look like true pneumonia but more like atalectisis. He wanted me to schedule a bronchoscopy to look down into his throat and lungs. He said we can stop the breathing treatments and contine the Zyrtec. We left feeling pretty confident that we would have some answers soon. That evening I got a phone call around 6:30pm and it was the doctor. He had gotten back some of Ethan's bloodwork and wanted to admit him into the hospital for further testing. My heart dropped into my stomache. My first thought was that it was cancer or something really serious. Come to find out Ethan did not have a white blood cell count. The doctor felt that since he had been running fevers and his white count was depleted that if he were to come down with an infection then he might not be able to fight it off. So off to the hospital we went. He saw quite a few doctors and a few nurse Ratchetts. They were concerned that it was either chronic Neutrapenia (not good) a virus or the beginnings of leukemia (not good either) They were able to rule out chronic neutrapenia We go for bloodwork at the end of this week. If his counts are up then they can pass this off as a virus that depleted his neutraphils. If they are still low then it could be what is called autoimmune neutrapenia. They also are watching him closely for leukemia. We have to have a swallow study done and then pending the results of that we will go for the bronchoscopy. From now on if Ethan gets sick we have to take him right away to get his neutraphils checked.

Even with all that Ethan has been through he still has a smile plastered on that sweet little face. I have a lot to learn from my little boy. When my instinct tells me that I can do this all on my own I have to trust in God. It is hard for me to do. It is hard for me to not be in control of all of this. I know that it is all in his hands though. He put that sweet little boy into my home for a very good reason. Thank you everyone for your continued prayers and support.

frustration

I am so horrible at updating my blog. It has been a very frustrating 6 months. Ethan has constantly been sick since January. I have switched doctors and we are trying to get to the bottom of all of this. Ethan has been hospitalized 3 times with Pneumonia. He has had several bouts ot bronchiolitis, bronchitis, sinus infections, colds and strep throat. Currently we are trying to take care of the Pneumonia. He was diagnosed with pneumonia for the sixth time on June 10, 2009. His new doctor is the only one who ever ordered a follow up x-ray to make sure that the pneumonia actually went away. We went on vacation to Myrtle Beach and while we were there Ethan developed a high fever and would not eat and was so crabby. He had huge sores on his mouth. I actually got angry with him. I know he can't help it. It turns out he got Herpangina. He has sores in his mouth and throat which is why he wouldn't eat. I feel horrible for getting mad at him. Since he caught the virus it of course brought out the pneumonia symptoms. He had his follow up x-ray yesterday and no suprise there the pneumonia was not gone. So now instead of him having pneumonia 6 times it probably was there the whole time. I am so worried that his lungs are going to be scarred. Now we are looking into reflux. The doctor put him on zantac twice a day to reduce the acid. I had to take him this morning to get a TB test to rule out tuberculosis. He has already seen an ENT and Thursday he sees the pediatric pulmonologist. I am just beside myself. I am so tired of dealing with doctors and I want my little boy to be healthy and strong. I want him to have a normal life and not have to deal with medicine and breathing treatments and fevers. I love him so much that it hurts. I hate to see him sick. I hate it even more that I get frustrated with him. I want to know when this will end. When will my little boy be healthy? How can people have 8 kids or 18 kids and every one of them have the correct number of chromosomes. I somehow feel like it is all my fault. I do everything I can to prevent him from getting sick and yet it still happens. I am so thankful for that little boy and he has opened my eyes to a whole new world. One that I never knew I wanted to be part of until I had Ethan. Please don't leave any negative comments. I am not looking for sympathy. I just needed to get things off my chest and this post only refelcts how I am feeling at the moment. I will try to keep this updated more often.

Pictures

Here are pictures of Ethan from the womb to his 1rst birthday!
Ultrasound

Welcome to the world baby boy!

1 month

2 months

3 months

4 months

5 months

6 Months halfway there

7 months

8 months

9 months

10 months

11 months

HAPPY BIRTHDAY LITTLE MAN!!!!

An update

Haven't been on here in a while, here is the latest info. Things have been going really well. *knock on wood* At the beginning of January we had a birthday party for Ethan. I can't believe he is a year old. The time went by so fast. He loves to be around people and so of course he LOVED all of the attention he got at his party. He gobbled up his cupcake and liked playing with the paper that his presents were wrapped in. A few days after his birthday party, Ethan started to get very congested. He started running a high fever. I took him to the doctor the next day and she diagnosed him with pneumonia. The doctor was comfortable treating him at home and sent us home with antibiotics and instucted me on what would warrent a hospital admission. Later that evening, Ethan just kept gettin worse. I couldn't keep his fevers under control and he was having a hard time breathing. He was so listless. I was past the point of being comfortable treating him at home. I took him into the ER and they gave him a breathing treatment right away. They did chest x-rays which confirmed pneumonia along with bronchitis. They also tested for RSV which of course came back positive. So Ethan spent a few nights in the hospital. We were sent home with a nebulizer and more antibiotics. Then of course Dax and Emma got sick. This is all happening right in the midst of me stating back at college. So Dax and Emma went to the doctor and Emma had a double ear infection and a sinus infection and Dax had bronchitis and a sinus infection. Then 3 days after that the flu bug decided to visit our house. YUCK!!! So Everyone is finally healthy and classes are going well. My sister in law had her baby a little over a week ago (4 weeks early) and he is doing really well. He was 5lbs 12oz. I am an Aunt for the fourth time!
Ethan starts more therapy tomorrow. He is getting two extra sessions a week in addition to the MISD. He will start at developing connections for private therapy. Honestly I am fine with where he is at right now but the therapy is free and I figured it couldn't hurt. He is doing so well in so many areas. He is my little social butterfly. He loves attention from anybody (except now the stranger anxiety is starting to kick in.) Anyway, not much else has been going on. I will post some pictures of Ethan's party another time but now it is late and I have to try and get some sleep.

1 Year check up

Ethan had his 1 year well baby visit and he is doing so well. He weighed almost 22 lbs and was 30 inches long. He had to have a few shots today and then I had to take him to get some bloodwork done. They are checking his cbc his lead level and his thyroid. I really was inpressed with his new doctor. I went in thinking that I was going to have to explain to her about the thyroid. She had already looked it all up and had printed out the growth charts for boys with Down syndrome. She also said that since he is starting to mimic the sounds that I make to start using real words and see where he goes from there. I know he is probably a long way from talking but hey, maybe it is a start. Ethan is also jusr recently pushing up on all fours and rocking. Maybe he will be crawling soon? Here are a few new pictures of my sweet boy!

Ethan's favorite new game

Sorry it is sideways. I can't figure out how to turn it around.

Ethan's favorite new game