Bookworm

Simon loves to have us read to him, and he recently started taking his books to bed with him. He asks for them each by name. Pretty soon there won't be room in the crib for him to sleep.

All that reading is paying off. He can now count in English, Spanish and Arabic. Here we have semi-audible Spanish counting up to 13. We don't have a good video of the Arabic yet. He's learning so fast, he probably knows a lot more Spanish than we realize. I discovered the counting by accident, when I prompted him with "Uno..."

Babbling, Counting, Naming

Simon has a lot to say. Sometimes we understand it, sometimes we don't.

Mr. Meticulous

Little dude likes to set 'em up, and knock 'em down.

At it again, this time with books.

 

I have to admit, he comes by it honestly.

Halloween, not a big hit

His reaction to his costumes ranged from indifferent to angry, he refused to accept any treats from strangers, and he only enjoyed the Halloween festivities that took place in parks, where he could go "whee whee" on the swings. There's always next year.

Welcome home, Da-da!

Jibber jabber

We recently had Early Intervention here at the house to do a speech evaluation. When we had our cleft team visit at 16 months, Simon only had three spoken words (and eight sign language words) so the speech language pathologist on the team recommended a further evaluation. Of course almost as soon as we got home from that appointment he started learning new words every day.

I've been trying to get his words on video, but they are spontaneous and difficult to decipher if you are not around him all day, so no real luck yet. In the month between the cleft team visit and the Early Intervention visit, Simon learned at least 15 words. The one he uses the most, of course, is "NO!" The second most important is "Aya" which we just realized is the word he uses for his security towel.

So, long story short, he does not need speech therapy, which is great news. The evaluation measured him at a 15 month level (at the age of 17 months), and gaining quickly. We need to keep working on helping him learn to use a straw, which should help him keep his mouth shut and stop drooling. Although the drooling is already a lot better since we switched him from a bottle to a sippy cup.

Since I don't have any talking video, I'll just post an assortment of recent photos. We enjoyed a nice long visit with Teta, along with perfect weather, and a side trip to meet Simon's baby cousin Yasmine in Madison.

Cleft Team visit

a nice view from the Rush waiting room 

We have been working with a team of specialists for Simon's cleft from the beginning. Now that we are finished with the first big surgeries, we go see the team once a year for an overall well visit. We just had our first annual visit, which was a 2+ hour appointment at Rush where we saw the plastic surgeon, orthodontist, ENT, speech pathologist, and audiologist. Simon got a good report, his scars are healing well, his teeth look good so far, and his hearing is perfect. His ear tubes are still in place and working well, and he has not had any ear infections (knock on wood).

His speech development is on the slow side, so the speech pathologist recommended we have him evaluated by Early Intervention and see if he would benefit from speech therapy for a while. Of course, Murphy's Law, he has been working on a lot of new words in the week since we had our team visit. He now says "Mama" and "Dada" all day long, "done", "duh" (for duck) and "home". He is also making hilarious animal sounds, which we will try to get on video. On Friday he sucked water through a straw for the first time! That's an exciting milestone for a cleft palate baby who wasn't able to suck before.

The orthodontist said we have to get rid of his bottles, to keep the milk sugars from pooling around his teeth, since he is mainly using the bottle for comfort during the day. It's been a week since we took them away, and he is not impressed with the new sippy cups. He does pretty well with a regular cup, but he is still missing his security bottles for sure.

Not as little as he used to be

I recently took Simon's old Bumbo chair out of the closet for an afternoon while looking for something else, he managed to wedge himself into it. Then he got stuck. I dug up a pic from this time last year, our little dude is getting so big!

Starting "school"

Last week was Simon's first week of part-time daycare, with his friend and neighbor Abby and his trusty towel for security. He went 3 days last week, the pictures they sent us tell the story.

Anger

Acceptance

Cautious Optimism

Oh Joy!

15 months and feeling good...

That's the SWEAT... of the Blues Explosion!

Simon had his 15 month checkup yesterday, apparently the shots he had to get weren't bothering him none last night as he rocked out with his newest dance move, the "sprinkler".

The best milestone he has reached is the silliness he has now. He loves clowning around for us and performing. Here he is doing some of that, and trying out one of his new words, "hi!".



So far it's just that and "uh-oh" for speech, but he is using 5 signs on a regular basis, so he's communicating pretty well. He'll have a full evaluation by a Speech Language Pathologist as part of his cleft team well visit next month, but so far so good.

It's been a while...

This past month and a half I haven't had the heart to replace Michael's beautiful eulogy for Adel at the top of this blog. Nothing we've done since then has seemed important enough to take the top spot, but the little dude is as busy as ever.



Now that it is summer and Simon is walking (and running!) really well, we are spending lots of time at our local parks. He loves chasing other kids, picking up rocks and sticks and putting them in containers, and he's starting to get interested in trucks and balls as they zoom past him. He's always trying to steal snacks and cups from other kids' strollers, I have to keep an eye on him.

What else... we went to LA in June for Michael's friends Matthew and Vart's wedding, we celebrated Simon's first birthday (a bit late) and he refused to eat cake or even put his hands in it, Teta came for a nice visit, and we went to Michigan for July 4th weekend.

Adel Selim GirgisSeptember 22, 1938 - May 24, 2011

This past Tuesday we received the news that we have been expecting for a while now. My father Adel, Simon's Giddo, passed away. He never regained consciousness after his stroke in March, so we are comforted to know he was not aware of any suffering, and was living a full life until then. The funeral service was yesterday here in Houston. Below is the eulogy I delivered at the church.

My dad had a long list of personal and professional accomplishments. But before I was aware of any of his successes or life stories, he was simply "Pappy." First, he was a father, and eventually a great friend. So my favorite memories of him will be the simple ones. Lazy games of backgammon in the afternoon, sipping cups of turkish coffee, trips to the hardware store where we would pretend that either one of us had the slightest clue what we were looking for or that we knew what to do with it when we found it. One of my all time favorites - arguing over the check at the end of a meal. And just those rare moments when no one else was around and I had him all to myself. To just chat about this and that or nothing at all.

He wasn't the kind of guy who would sit you down on his knee and rattle off quotable bits of advice for how to live your life. Instead, he taught by example, with quiet confidence, humility and grace. Of course, as a child you don't realize how much you're learning from your parents. Then as you grow older and as you start a family of your own and as your life starts to get just a little more complicated, you become more and more aware of all the things you do, all the decisions you make, which are so clearly influenced by how your parents raised you and how they lived their lives. With every passing year, as I've become more and more aware of the influence my father has had on me, my respect and my admiration for him has grown dramatically, and continues to do so.

My dad was a very peaceful man. And as much as he enjoyed spending time surrounded by friends and family, he also really appreciated his quiet time alone. There were few things he enjoyed more than a nice quiet cozy chair somewhere with a view. We used to go to Galveston often when we were younger, and of course we would head straight to the beach where my dad would find a comfy chair, lean back, and say to everyone, "Ya salaam. Listen to the breeze!" which never really made sense but we knew what he meant. If you leave here today wondering what you can do to honor his memory, I would suggest simply finding a nice comfy spot somewhere where you can appreciate a moment of peace and quiet and just take some time to listen to the breeze.

I want to thank all the people who have been so supportive over the last several weeks. So many of you have been so gracious with your time and we would not have been able to get through this period without your support. The names are too many to mention. You have provided medical guidance, kept us company when we were stuck in Galveston, given us rides to/from the airport, cooked meals, and kept my mom company when Peter and I couldn't be here, sometimes coming all the way from Egypt and staying for weeks on end. Thank you all very much.

We sent a bunch of pictures to the funeral home which they used to create a photo album.

Walking! Look out!

Simon was really in the mood to practice walking yesterday, he thought it was hilarious. He's on his way now...

Thinking about walking

These days, Simon is sometimes letting go of our hands or the furniture while he's concentrating on something. His balance is getting better, sometimes it looks like he's trying to raise something in the air using The Force. There are a couple of stumbling steps here and there, walking can't be too far behind.

Surgery followup

We had our followup appointment with the surgeon last week, it's taken me a while to post. Simon is keeping me pretty busy. Anyway, everything is looking good, he is healing well. He has been still fussier and more sensitive than usual, but that's to be expected. We will have one more checkup in 6 weeks, then nothing until September when we will see the cleft team for the first of our regular yearly evaluations. He will see the surgeon, orthodontist, ENT and the speech therapist all in one afternoon to see how things are coming along.

Every day he has less cranky times. He has been pretty challenging to feed lately. He won't tolerate any utensils near his mouth, he wasn't a big fan of the spoon even before surgery. He likes to feed himself, but he hasn't been eating a whole lot, until the last couple of days it's gotten better. He is almost back to normal sleeping, just one wakeup at 4:30 a.m., and then back down until 6 a.m.

He loves his dishtowel more than ever, now he wants to carry it with him, usually in his mouth and trailing on the floor. Luckily we have 6 of them, so we can keep giving him a fresh one. He loves to hold his bottle while he's in the stroller or the carseat, but he thinks it's hilarious to turn it upside down and shake the milk out, which is why he has wet spots all over his sweatsuit above. He's also really interested in keys, wallets and phones, as well as cabinet doors and drawers, leading to some pinched fingers. He loves to shake containers to see what noises they make. This morning he was doing that and my vitamins ended up all over the bathroom floor.

Happy Easter!

No chocolate bunnies this year, but Simon is keeping busy hunting for eggs.

Feeling better

Simon has been doing a lot of sleeping - not for longer than 2 hours at a time yet, but resting and healing. We got the go ahead from Dr. Smith to give him soft finger foods last night, and that helped a lot. He refuses to take any food by spoon or dropper or syringe, so it was pretty much just milk with a touch of rice cereal for the last couple of days, and the poor little guy was so hungry. So he's back to eating some of his favorites, avocado and squash and tofu.

He has several teary meltdowns a day still, he seems to just be a little edgy from lack of sleep and maybe some discomfort here and there. There are dissolvable stitches in the roof of his mouth and inside his nose, plus the unfamiliar feeling of having the roof of his mouth with no gap in it. He is also very clingy and snuggly, which is a change of pace for our little independent adventurer.

So far each day has been much better than the last, and although this surgery is more of a challenge for him physically than the last one, in some ways it has been easier. There is less medication to give him, and we don't have to deal with any apparatus like the nasal stents or the NAM. Plus we can distract him with toys and books, so most of the day he is happy as usual.

Home again

What a difference a day makes. Yesterday and last night, Simon was pretty out of it. We kept him comfortable with morphine until this morning, when we switched to Tylenol. As soon as he got the O.K. from Dr. Smith, he enthusiastically drank from his bottle. He was doing well enough by 1 p.m. that we were able to go home. As we expected, he was so happy to be out of the hospital and away from the IV and all the wires that he was cheerfully playing right away. He's still a little swollen and on a liquid diet for a while, but he's doing great and taking plenty of fluids.

Nancy surprised us by coming in at the last minute from Texas, and Simon enjoyed spending time with Teta as well as Mom-Mom and Grampy.