Saturday, September 20, 2008

"Is He Cross-Eyed?"

I was at the checkout stand at our local co-op when the lady checking us out was really "checking us out." She was looking at Mateo in the shopping cart and mentioned how cute he was and how he looked like a little man. It must be his new crewcut, it really is adorable. Then she was looking at Joaquin who was in the baby carrier on my chest and she asked if he was a boy. Then came the "look". She stared briefly at him and then asked me "Is he cross-eyed?" I took the comment as just a matter of fact conversation and said, "Yes, he's cross-eyed." Then I mentioned that we were going to work on trying to correct it and left it at that. This was the first time a stranger has said anything to me out of the ordinary about Joaquin. I took it in stride but I know this is a first of many "looks" and comments that we might get for years and years to come. In the past, when people have stared at the baby, I just assumed it was because he's the cutest darn thing but now I'm wondering if it's because he "looks" different.

Anyway, it's time for an update on our little man!

Joaquin is now 7 1/2 months old and he just started solid foods. He's had peas, carrots, sweet potatoes and applesauce. He loves them all (most of the time) but I discovered after speaking with his speech therapist that I'm putting way too much on the spoon. We are supposed to feed him on alternating sides of his mouth which will help encourage him to use all the muscles of his mouth and tongue to move the food around and swallow. He has no difficulties swallowing and he loves to blow raspberries when his mouth is full. Too funny and very messy!

We have a hearing aid evaluation later this week. We will determine whether or not we need to use hearing aids until his ears are big enough for tubes. Last visit to the ENT (Ear, Nose, and Throat) doctor, we found out his ear canals are still too small for tube placement. This could change quickly though, even in just a few months.

Last week we had our first visit to the Opthomologist. As I mentioned earlier and you might have noticed in the photos, Joaquin is cross eyed so we knew going into the appointment that he had a strabismus. He is also still very sensitive to light. The face he makes when he's in the bright light is hilarious. He's quite a "ham" already and is showing us his humorous side with his facial expressions. The doctor said that his sight is good from what she can tell so the strabismus is more likely related to a brain disorganization. She is recommending that we "patch" his good eye 3 hours a day for 3 months and then reevaluate. Joaquin is so easy going that he doesn't object to the patch at all and even in a few days we've seen some improvement. 10% of the cases of strabismus can be resolved with just the patch alone. If in 3 months, he continues to have the crossed eyes, she will recommend surgery. Now comes the hard part, the Institutes does not recommend patching and also does not agree with surgery. So we will have to weigh both sides of the argument and decide which course of action is the best for Joaquin. The Institutes believes that the sensory stimulation part of his program is in essence organizing and developing his brain, so the professionals there don't see the need for patching. The sensory stimulation program which includes the bits of intelligence cards and the light reflex exercises, where we go into a darkened room and shine a light into each eye over and over again several times a day, is much more comprehensive. They also feel that surgery may correct the condition temporarily but without solving the root of the problem in the brain through sensory input, the effects of the surgery will not last for very long. Decisions, decisions.... We will see an eye doctor in Philadelphia when we return in December who is very familiar with the Institutes program and children with Down syndrome so we look forward to hearing his opinion based on what he knows and has witnessed with the program.

Joaquin reading his bits of intelligence

Finally, Joaquin is still progressing and always impresses his physical therapist, Michelle, who comes to visit him twice a week through Alta Regional Center services. On Tuesdays, she meets Joaquin at my parent's spa and they do water therapy together. On Wednesdays, she comes to our house and works with him for about 45 minutes. Hector and I can't always see the gains because we are with him constantly but with Michelle coming twice a week, she is able to see and remark on all the progress he makes and she is always amazed. His trunk control, head control, upper body strength and endurance are all improving in leaps and bounds. He is able to hang from our thumbs for up to 10 seconds suspended in the air. We can tell he is getting more oxygen and increasing his lung capacity because the volume of his voice is louder and stronger every day. He will often begin the day "talking" which sounds more like yelling right now. This has become Diego and Mateo's wake up call....sometimes earlier than we would like but very cute nonetheless.

Joaquin has also developed a bit of stranger anxiety and we are so excited!!! I know it sounds strange but we were so proud the day he cried in the arms of a dear friend of ours because the voice and the face were unfamiliar to him. The fact that he can notice this is such a big milestone. We had to explain to our friend why we were so excited about it even though normally it's not something to rejoice.

We continue to work with the Intensive Treatment Program and some days it's harder than others to get it all in but we give it our best effort. There is the occasional day that I find myself just wanting to hold him, kiss him, stare at him and cuddle him and I could do it for hours and hours. His sweet face, his amazing dark curly lashes and his huge grin are just the best.
Joaquin's most favorite thing right now? Itsy bitsy spider! It's gets him giggling every time. That....and cheering and clapping should see how wide his grin is when we get going. He continues to amaze us and humble us every day.

And here is Joaquin playing with his Papa...


Erika said...

OH my gosh.... he's just the sweetest ever.... Gotta love the toe-suckers ;c) ~Erika

Lisa said...

Jennifer, you recently left a comment on my blog, which has led me to your blog. I've enjoyed reading it so far :) Would you mind if I added it to my blogroll? Joaquin is a beautiful boy!

Lisa said...

Jennifer, you recently left a comment on my blog, which has led me to your blog; thank you. Would you mind if I added your blog to my blogroll? Joaquin is a beautiful boy :)

Hector and Jennifer Varanini Sanchez said...

I would love for you to add our blog to your blogroll. Thank you! Whatever we can do to help other parents going through similar situations or just looking to learn more :)!
Thank you!

Cleo said...

Joaquin is gorgeous!!!. I'm happy for his progress, he is such a smart baby. Love the video and the song. :))

nolegirl said...

Joaquin is so beautiful! If you ever need any help with services or programs let us know. Scott would take him in Project PLAY in a heartbeat.

sheree said...

ahh, "the looks." I find myself wondering ALL the time if people are staring at my baby because she is cuter than words can express or if it's because she looks "different." It's hard not to wonder...

Good to hear Joaquin is displaying some strong core strength. That is impressive!

I need to hear more about this Parent's spa ;)

I had SCOE and Alta out here just the other day checking up on Gabby. Can't wait to have Gabby and Joaquin meet at the Buddy walk! Maybe they'll be lifelong buds! :)