Chalk another one up for Down syndrome

Idiopathic hyperthyrotropinemia. Early hypothyroidism. Pediatric Endocrinologist. Dang Down syndrome.

On a regular trip to the pediatrician, I decided to have her check Malachi's T4 and TSH. Why? Because I've become obsessed with researching common medical conditions associated with Down syndrome and hypothyroidism has appeared on every list. She (the doc) thought I was crazy for wanting her to order a blood test when he was experiencing no symptoms, but I insisted and she obliged.

Fast forward a few days later...

My phone rang, I answered it.

"Mrs. H? "
"Yes" I reply.
"Malachi's T4 and TSH came back."
"Oh wonderful, what were the results?" I questing, expecting good news.
"Well...His T4 is lower that we would want, but still with in the normal range."
"Great!"
"But his TSH is high and I am referring him to a pediatric endocrinologist. I dont know how you do it, but your intuition is amazing"
After a little more small talk, she hangs up the phone.

My intuition is amazing? I was wishing it wasn't so but the truth is, it is. Humble, I know.

As is a pediatrician, GI, Neurologist, 2 neurosurgons, an eye doc and an ENT isn't (lets not forget OT, DT, PT and ST all weekly) enough to keep me running all around northern Illinois and souther Wisconsin, lets add in another doctor.

Much to my surprise Dr. C is amazing, and agreed that treating Malachi with medication is the best possible answer.

Welcome Levothyroxine, you join a long list of medications my 2 year old has been on. Sounds like you will be around for life, welcome aboard!

This wonderful meeting of DR. C was on monday.

On Wednesday, we took another trip back to the pediatrician. This time it was for constipation and reflux.

While there, Malachi was put back on reflux meds and BOTH boys were put on miralax. This time, Dr. M suggested we test Elijah's T4 and TSH.

I also asked for neck Xrays for the boys.

Thursday I got another phone call from Dr. M.

"Hello Erin?"
"Yes Dr.M, nice to hear from you, Im assuming you got the results for the x-rays and lab work?"
"The x-rays were not accurate, Im going to refer you to the hospital to have them re-done."
"What about Elijah's blood work?"
"Well Erin, It looks like Eli will be joining Malachi at the Endo. His T4 was normal and his TSH is high. Actually, its higher than Malachi's."

Another one bites the dust.
Chalk another one up for Down syndrome.

So what if?

Consider this senario with me...

A husband and wife gather their family together to tell them the good news. After years of trying they are finally pregnant! Their family is bursting with joy, they know this has been a long journey. Soon after the announcement the questions begin...

"how far along are you? When are you due? How are you going to fit in that small house? Do you know the gender?"

Their responses are typical...


You make think this is silly, perhaps it is. I was talking to a friend the other day who is currently pregnant with her first child. They had been trying for a while and finally they got to announce that she was, in fact, pregnant. I have never gotten to pee on the pregger stick or announce to the world that I was carrying a new life in my bellie but I am the mom to two amazing boys I have felt the joy in bringing them home for the first time and the excitement in introducing them to our family.

Back to my friend...

I was around her recently when someone asked if she wanted a girl or a boy...her response? "it doesn't matter as long as he or she is healthy."

I've heard it a million times and I'm sure you have too. At the time I didn't give it a second thought, after all isn't that what every mom hopes for? But it didn't take long for me to think...but what if that joy as days comes when you get to meet your child and you find out that they are not healthy? What happens then?

Our situation is different. We adopted both boys knowing that they were "not healthy", down syndrome, heart conditions, prematurity...the list really does go on and on. All those things we knew about...

About a year an a half into motherhood I was taught an invaluable lesson when we found out Malachi had a stroke and his further diagnosis of moyamoya. I learned that at any second your life can change. I could deal with all those things listed on the adoption papers, but a stroke? Brain surgery? I didn't sign up for that. As Josh and I sat in the er room holding Malachi worrying about all the what it's we had a discussion. Through our sobbing, we decided that no matter what happened our hopes and dreams for Malachi would not change. He was alive and at the end of the day, that's all that mattered.

So what do you want, a boy or a girl? I'll tell you what I would want...a baby who will make this world a better place just for being born. A baby that will teach us the meaning of life is more than just getting from point a to point b. That's the kind of baby I would want, any baby healthy or not will do just that. I'm thankful for my children even though they were not born healthy and my dreams for them are to grow up to be the best they can possibly be!

New year's resolutions

I'm not one to make new years resolutions. I've tried before, giving up pop, losing weight, keeping the house cleaner, so on and so forth. Like many others, my resolutions rarely last longer than 3 months. Life gets busy and that can of coke is oh-so needed after a late night, the McDonald's drive through is calling my name on the way to an appointment and laziness sets in. I question if these things really matter. Will no pop make me happier? Will stressing over losing weight make me a better mom? In some forms, possibly but the guilt I feel when I fail makes me me feel sad and defeated. What I long for is to make changes that will make my relationships stronger, my marriage stronger and my children stronger. So this year I wont feel guilty for drinking a can of pop or letting the laundry pile up on the laundry room floor. This year I'm going to do a better job supporting, encouraging, thanking and loving on those closest to me. That's my new years resolution. What's your's?

Woah!

I can't believe it's been so long! It has been a wonderful and much needed break from the blogging world. I wanted to start off the new year with a bang, some exciting news or the perfect picture but I have none. Sorry to disappoint. The boys are doing great and both have had a growth spurt over the last few weeks. Christmas was a blast. We enjoyed time with our families laughing and making memories. New years was nice as well. We were able to host our good friends for the night. We had good food, fun games and nice relaxing night. It was truly all that we could have asked for.

My hubby goes back to work on Tuesday and I am not looking forward to it. We have had two weeks together as a family and have enjoyed every minuet of it. We got to go to the Shedd Aquarium, see the Harlem Globetrotters and Josh and I even got a date night! Christmas 2010 has been a blast, looking forward to doing it all again next year!

This is my official "welcome back" post. Sorry it was so lame!

What a Week!

I'll admit. I've been in a blogging slump. So much to say but no desire to do so. Call it what you will.

Regardless, I feel the need to post something...anything. So here goes nothing....

On Monday we had Malachi's IFSP meeting. It went better than expected. There was absolutely no arguments and not once did I have to disagree. Unheard of, I know. I am oh so thankful that it went smoothly. We have CUT BACK Malachi's PT and OT from twice a week each, to once a week each!! We all feel his recovery from his stroke has been magnificent and that we don't need to keep up with the extra therapy! Woo hoo, this tickled me pink! We also decided that when spring comes he will have land PT twice a month and aqua PT twice a month! So excited about this, as I know he will LOVE it!! I also found out that we will soon be having his transition meeting (probably Feb.)! Yikes. This took me by surprise and brought tears rolling down my face! I am so not ready to put him on the bus and send him to school 4 days a week!

In other news, Malachi was taken off his Reglan. His pediatrician felt the risks out weighed the benefits and he has been on it for over a year! We are pleasantly surprised that his reflux seems to be better and we have had very few issues. We are planning on keeping him off of any reflux meds from here on out!

Hope we you have a blessed weekend. We will be busy celebrating birthdays (joshes mom and grandpa), making Christmas cookies and attending an ugly Christmas sweater party. Oh and did I forget to mention more snow and bitterly cold weather? Moving someplace warm always looks good this time of year!

Feeling Blah

It's that time of year again and while I should be bursting with joy with all things holiday, I find myself in a funk. A fun which creeps up on me despite my best efforts to brush it off. Not only has the weather gotten cold, the snow has begun to fall and the ease of taking 2 children out has disappeared, its also Malachi's annual IFSP time. This means re-evaluations and a meeting, with his team and most likely a "discussion" or two (lets be realistic the whole meeting will be a "discussion")

After a week of evaluations, it has been determined that Malachi is behind. Go figure right? Down syndrome, premature, drug exposed, stroke, heart defect, poor vision...the odds are stacked against him. So why am I feeling so negative about the situation? Good question, but I have no freaking idea! Malachi has overcome SOOOO much, shouldn't I be happy that he is walking, crawling up the stars, signing over 40 signs...the easy answer is yes. And I am! So very thankful that his massive stroke didn't leave him paralyzed, that being born only weighing 3 lbs didn't cause him to be hooked up to an oxygen tank 24/7 and that he is doing so much...SOOO MUCH!

BUT, there are things that still get to me. Talk about how his lack of attention, his anger management skills, the fact that he STILL can not eat table food, questions about his lack of verbal speech, his lack of use in his right arm (still left over from the stroke)...so many challenges to overcome, such a long road a head of us, how can I not feel depressed? I rarely feel overwhelmed (for example, elijah's heart surgery and week stay in the hospital and Malachi's stroke 2 days after Eli got discharged followed by another week in the hospital...I like to think I endured that like a trooper) and I am struggling with how to handle it. I dont like it, not one bit. BUT this to shall pass...right?
For now I will look at these sweet faces...

and remember that we do this all for them! And they are soo worth it!

Thryoid?

Malachi has been sick, go figure. While we were at the pediatricians office, for the 3rd time in 2 weeks, they decided to run some labs to check for allergies. While they were taking blood I ashed her to go ahead and check his thyroid. While the RSV, Influenza A and B and allergies all came back negative, his TSH came back at 5.79 and his T4 came back at 1.1. We were referred to a pediatric endocrinologist. Just wondering if any of you have been through this and can offer good questions to ask. Thanks!