|Signs by LoLo, Tommy, Addie and Eloise|
|Thomas Henry-- we are back!|
|Hershey couldn't stop "kissing" Joey.|
|A little tired after all the love.|
|Hi Miss Maureen!|
Tommy had a great time with LoLo last week, but was definitely ready for us to get back home. While we were gone he told everyone and anyone that, "Joey has a boo boo." We showed him Big Joe's battle scar and Tommy said, "That makes me very mad. I am angry. Cover it up." Wow. So profound and yet it about broke my heart. It was exactly what a big brother should feel-anger that his little brother had to have a boo boo like that.
Despite being angered by Joey's big scar, Tommy was back to being Tommy in no time. Our first night home he had two different kinds of ice cream for dinner and about anything else he asked me for.
|Yep- that's chocolate all over his face.|
Wednesday morning I went in to get him up and he said, "Mommy, can I go bye bye with you? Please, please, please." For the past few days he has pretty much been my shadow and I've eaten up every second of it. Usually he is a super independent (read: not overly affectionate) child and to have him stroke my arm while we sit on the couch or not want to leave my side was a big comfort this week.
|The bubble machine! 4,000 bubbles per minute.|
In the meantime, we're all trying to figure out how to get back to "normal"-- whatever that is. When we first got back I was elated, excited and thrilled to have gotten past the surgery. By Wednesday, there was a little bit of a letdown and I felt a little overwhelmed. The piles of laundry that needed washed. The bags that still need to be unpacked. Trying to get everything organized.
On Thursday Joey had his first follow up appointment to get the chest tube stitches out and get his bloodwork done to check his thyroid levels again. The four of us went because we need to be together as a family and for the first time I had to leave the room during a "procedure". It was a tiny, tiny room at the doctor's office with me, Tom, Tommy, Joey and the doctor all crowded in. He tried to find the stitch, but in the past week, Joey's skin had grown over it and it was hidden under the large scab from his chest tube. His doctor started to dig for it and the room started closing in on me and I got really clammy and that weird sour sensation in the back of my cheeks started in. Tommy and I escaped for a walk across the walkway to the children's hospital. I've never had to leave before and we've been through a lot of procedures (although we didn't watch him get extubated or the chest tube pulled-- the doctors recommended that we step out for those), but this time I think I may have hit my current capacity.
The doctor's office called on Friday and instead of getting the voicemail that says all the bloodwork was fine, I got the one that said to call the doctor's office. Ugh. My mind immediately goes to the big C. Cancer. Every--single--time they run his blood count. Why cancer, you ask? Well, children who have Down syndrome can have up to a 10 to 30 times greater chance of having cancer before they are five-years-old. I literally had to read the section that explains this in our book, "New Parents Guide to Down Syndrome" about four times. Do I think Joey will get cancer? No, but if he does I want to at least be prepared. I know-- wishful thinking, right? I want to be prepared for everything and anything that happens to Joey, but I can't. That small fact does not stop me from trying to be.
I called his doctor back and the blood counts were all good (yay!!!), but his thyroid levels were off again. His T4 was normal (it was slightly elevated in Michigan before the heart surgery), but his TSH is more than double of what it is supposed to be. The TSH- thyroid stimulating hormone-- is what tells the Thyroid to make T4. Also- proper thyroid function is particularly important under age 3 when there is significant brain development.
We're working on our plan of action this weekend. Treating it is not a big deal-- it basically would require being on thyroid meds the rest of his life. It's more this in combination with everything else and all the heart meds he is on now. On top of that, I started reading a blog about a little boy who has Down syndrome and there is an entire list of all the things he can do (he is 11 months old-- Joey is almost 10 months old). This little guy in the other blog can sit up, say ma ma, pick out colored blocks, play peek a boo, self feed-- my gosh-- the list goes on and on. All I could do is read it and think-- but we can't do any of that, yet. It's such an overwhelming feeling. I feel like I have so much work to do-- so much to help Joey with. I need to slow it down and take it one day at a time-- I know this. I need to let Joey heal and recover. I also know this. That being said, we have a LOT of work to do and it's my new mission in life to help this precious boy start to thrive even more. In the meantime, he just smiles at me and melts my heart along with anyone else who meets him. Thankfully I have a husband who knows exactly when to help me slow down and calm down.
|Shanna and Miles dropping off a meal (and Dos Equis!!!)|
There's a lot on our "to do" list. The process of getting home (for days I had no idea what the date was or what day of the week it was) and getting organized has been slow, but it has been greatly helped by a "meal train" set up by many, many kind and compassionate friends who have been cheering Joey on all the way. It's also been greatly helped by the kindness of other friends who organized a clean up day in our yard while we were away last weekend. Visitors, friends and family have given us so much love and it is truly making this recovery much less stressful than it would be. We feel so blessed that Joey has touched and inspired so many people to go above and beyond. We've gotten scar cream in the mail, cards and notes of love and good wishes for Joey, bottles of wine dropped off on the front porch (my personal stress reliever), a new changing table from Tom's mom for the family room so it is easier to change Joey rather than carrying him upstairs. It's just incredible. I try to mention every act of kindness and I'm sure I miss some of them. I hope that people know how much the kindness means. I go to bed every night feeling so incredibly thankful, grateful and blessed. We wake up every day feeling the same.
Let's see his big post-operative smile one more time for good measure....