A cute story

My son Dax was reading a book and then put it down. Naturally when he put it down my daughter Emma picked it up. This of course set my son off and he said, "I had that book first and I wasn't done with it and Emma took it from me." So I said "well Dax, you did put it down, but if you really want it back maybe you could go upstairs and get Emma another book to read and she might give that one back to you."

Dax stomped upstairs and a few minutes later he comes down with the biggest book he could find (a childrens bible) He tosses it on Emma's lap and says, "here Emma, you can read the bible."

Emma, not to be outdone opens it up and says excititly "LOOK, A SHARK" (Jonah and the whale)

Dax throws his book aside and runs over to see. Emma slams the book closed in his face and says "No Dax, you have your own book"


I love my kids.

No rest for the weary

I am feeling very tired these days. Thank you pregnancy! It is a rare occurrence at my house to actually be able to snag a quick little nap. Usually if I can I try to take a quick little snooze on the couch. It never fails though, someone is always hungry or thirsty. So today, I thought I would be smart and I gave them a snack and a drink before I layed down. Then I sent them to their own rooms to play. I was happily drifting off to sleep when I hear all the way from upstairs "MOM, I"M DONE!" In case your wondering, in our house that means a certain little girl has gone number 2 and needs some assistance. In my fog I think I actually yelled up for her to do it herself. And then I started drifting of again but instead of peaceful dreams I had visions of cleaning up a bigger mess (if you know what I mean.) So at that point I figured it would be better to abandon all hopes for a nap. Sigh! I will be be able to sleep again someday.

Conversations with a 5 year old

Today, I picked my 5-year-old up from kindergarten and he had very exciting news to share with me. As soon as he got into the car he said:

Dax: "mom, open up my backpack and get out that blue piece of paper"

Me: "Okay" I open up the paper and it is a beautiful rainbow surrounded by hearts. "wow that is very nice." I say


Dax: "Yeah, Avery made it for me" (a little girl in his class)

Me: "wow, she must really like you"

End of conversation, until 20 minutes later....

Dax: "hey mom"

Me:"yes"

Dax: "You know that paper in my backpack?"

Me: "yes, what about it?"

Dax: "Well, I made it for myself..."

Me: confused "wait Dax, did you make it for yourself or did Avery make it for you?"

Dax: Pauses, sighs and then says "well, Avery really made it for me, but she wanted me to tell you that I made it for myself so that you wouldn't know that she loves me"

Me: Chuckles to myself. Thinks oh great here we go!

Dax: "yeah mom, Avery used to like me but she doesn't like me anymore. She LOVES me." "Isn't that crazy mom"

And I end the conversation with, What about Sofie and Isabel? (two other little girls in his class that he likes.

Dax: "well, I still like Isabel the best."

So much joy

Yesterday, I went to a moms night out with our FEDS group. A few of us got into a discussion about having testing done after you have had a child with Down syndrome. I am one of those people who usually need to know. I was one of those kids who opened their Christmas presents before Christmas, I have always found out the sex of my children before they were born, and when my triple screen came back showing a higher-than-normal chance that my son would have Down syndrome, I did the amnio so that I could know for sure. I just don't usually like surprises. Even after I did find out that Ethan would have Down syndrome I was still terrified because of the unknown.

But my little boy has changed me for the better.

I no longer, have to know.

I am pregnant with my 4th child, due in early July. At first, I was going to do the CVS to know the earliest that I could. Then I was going to do the amnio, but that deadline came and went and I never had it done. I do not need to know because I realized that it doesn't matter.

I love my son and I will love this new little boy just the same. We will not know until he is born weather he will have that extra chromosome. I had never pictured my life having a child with Down syndrome in it, but now I have a hard time picturing it without. Thank you Ethan!


And now for some much needed updates on Ethan.

He is doing very well. He is a very active 2 year old little boy and sometimes I have a hard time keeping up with him. He can climb anything and has even climbed out of his crib already. I am so glad he is so active but WHEW! Slow down little man!! Ethan is doing extremely well at signing and has even started signing 3 words together. ( I will try to post some video later) He is also saying about 15-20 words. He can say, ma-ma, da-da, Emma, up, ball, bath, all done, Abeula (bay-la) cookie, more, drink, Granny (na-nee), uh-oh, what's that, this. He is starting to repeat words back to me. Nothing huge, just some small words and I can't even put down all of the words that he is signing. He is just one amazing little boy.

So far we have had a healthy winter. Ethan was hospitalized overnight because he caught the stomache flu from his older brother and became dehydrated. Other than that we have just had the occasional runny nose (so common during Michigan winters.) The thickened liquids have helped so much. Now if we could just get the thick-it covered by insurance. HMMM.

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.