Sunday, June 26, 2011

Lava Lamps and Tie Dye

Daniel's caregiver is in the process of making his room more of a sensory den for him. She bought a black light, lava lamps, and glow-in-the-dark stars. As mentioned in the last post, I am trying to find new music for him to divert the hands from his mouth, and one thing that works is drumming. Santana was a hit, but since I don't have any of it on CD yet, he's been jamming to Michael Jackson all weekend.

To complete what's turning into a seventies theme, we tie dyed shirts yesterday. Daniel's turned out the best in green, yellow and blue. He is LOVING his cool digs, but as you can see from the picture below, he's not ready to give up the hand habit just yet.

He's been very calm and happy the past few days, and I believe the glowing sensory additions in his room have helped. Since I've not been feeling well, it helps when he's able to play and be entertained by his surroundings. I feel anxious when I'm sick and I don't have the energy to take him for walks or get his AFO's on for some exercise. He's been ok with it all.

Tomorrow we start the countdown to summer school for both of us. I can't say I'm looking forward to getting us both up, ready, and downtown by 8 a.m. The past few weeks have been heaven. Sleeping in, no schedule...we have both loved it. I may have to spend some time gazing at stars in his room, giving myself pep talks before July 5th. For now, let the drums keep rolling!

Thursday, June 23, 2011

Drum Contest--We Have a Winner!

Daniel loves to drum. He also loves to put his hands in his mouth. When he's doing the former, we get a lot less of the latter. So, I've been trying to figure out what his favorite tunes are. He likes a lot of different music, (he does come from a family of musicians and singers, after all). I spent part of yesterday playing a variety of stuff to see what gets the best reaction.

So, what were the final results?? Drum roll, please......

Santana wins by a landslide! Especially this familiar tune--

Rock on, Daniel, rock on!

Saturday, June 18, 2011


The other day my cousin Sue shared a song with me via Facebook. It's called Blessings, by Laura Story.

One of the lyrics is, "this is not our home." That brought back a poignant memory from when Daniel was just over a month old.

We had no diagnosis at that time, other than microcephaly. We'd been to the geneticist, all tests were normal. They told us to "wait and see". He could develop normally. Some people just have small heads.

On a beautiful, sunny day in February our pediatrician called after a visit with the geneticist. She said that the two had talked and decided we needed to be admitted for Failure to Thrive.

Wait. He's gained weight! That's not what Dr. P says. No! He has! I have it written in my log. I'm on the phone outside while Melody plays on the porch. My mom and dad are still in Florida following his birth, helping us out everyday. I don't want to leave. I DO NOT want a hospital admission. My son is FINE.

The decision was made. They admitted us to the Children's Hospital to monitor my milk supply (it was fabulous, I felt I could get side work as a wet nurse), keep close tabs on his weight, and maybe do a few more tests to see what was up with this tiny boy with the small head and big ears.

I was so sad. I just kept repeating to myself "this is not our real home." (Meaning earth.) I was terrified.

During our stay I kept my log of his weights, weighing him before and after every feeding. He DID gain, although not alot. Still, the pediatrician didn't want to let us go home after 3 days because the nurse's notes didn't reflect what my notes did.

I showed her my record again, and we weighed him once more. We went home late that evening. I think I let go a little, too. I knew then that Daniel would not be a typical boy. I knew in my heart that we were going to face hard things.

In the song she asks, "What if the trials of this life, are your mercies in disguise?"

I do know that what looked unbearable to me at that time turned out to be just fine. Are there struggles? Yes. But the happiness definitely outweighs them. He enjoys life, we enjoy him. That's all I know for sure.

Monday, June 13, 2011

Summer Time!

Our last day of school was Friday, so today is the official start of summer for us. It was so nice to get up the lazy way today! Daniel and I were the first ones up at about 7:45. He played, I drank coffee, talked to my mom on the phone, then we went for a walk.

Saturday we attended a L'Arche carnival fundraiser at Christ the King Church. I've made a commitment to myself to become involved with the L'Arche community this year, and I started there. I met the director, a few of the core members, and some assistants. I plan to attend First Thursday mass followed by dinner in a different home as often as I can starting in September. We did this once before, and in checking old emails, I discovered it's been six years!

Reading 'The Boy in the Moon' inspired me to get involved with L'Arche in a deeper way. I don't know if Daniel will ever live apart from me, but if he does, I'd like it to be in one of these communities where life together is about friendship, not the typical caregiver-patient arrangement.

We went swimming again Saturday evening. He's really getting used to the new suit with the flotation, and had a great time splashing. He enjoyed that more than the heat of the carnival.

He and I have three weeks off followed by summer school together. I'll be working and he'll be attending a different school (different from both his and my usual schools) for three and a half weeks. It's a center school, meaning all of the students have disabilities. I spent a day of orientation there last month, and I was impressed with the atmosphere. It will be good to be exposed to different therapists and teachers. I'm hoping we'll both learn some new tricks to make life more interesting!

It's good to have a break from the usual grind. Yay summer!

Sunday, June 5, 2011

Pool Time

Daniel loves water. He has ever since he was a fussy baby. When he cried, all I had to to was sink into a warm tub of water with him and he'd settle right down. Bathtime is still a favorite for him, and he soaks the floor with his splashing (thank god for tile!). Today we stretched, kicked, floated and splashed our way through a Sunday afternoon. It was bliss.

Saturday, June 4, 2011

A Typical Saturday Morning

Daniel loves cars, trucks, anything with wheels. Here he is with one of his Easter basket gifts. He examines them, bangs them on the table, throws them, and starts all over again. When he's tired, he lays his head beside them. Note the overturned ambulance above his resting head.

I love lazy Saturday mornings with my boy when we're the only ones awake in the house. All is well in our world.