Friday, February 20, 2009

The Upside of Down

Things are looking up. Joaquin is still battling some congestion but after two rounds of antibiotics back to back, his ears look good. He is eating again and seems to be in the midst of a reawakening of his senses and his abilities.

It's funny how life is so up and down. One day is great, the next day not so much. Bumps in the road. Tripping on our own feet as we make our way down this unknown path of raising a child with special needs. One thing is for sure, I am completely exhausted and worn out at the end of the day but I have an endless reservoir of energy when it comes to Joaquin. I don't know where it comes from but I'm so grateful for it.

We got an email this week from our local DS organization about a Spanish speaking couple at a nearby hospital who had a baby with DS and they were looking for a peer to talk to in their native language about their fears and concerns. Hector was generous enough to take the time to call them and help them through their initial shock at the hospital. We might be meeting with them this weekend at the hospital as well. It feels good to help other parents out but I found myself worrying about them and worrying about the baby. Would they get all they need for their child? Would their language barrier hinder them in getting all their benefits and services? They live out of town and I'm not familiar with where they live so I just hope and pray for them and their child that they get what they need. I need to find out if the books that were my lifeline are published in Spanish....Gifts, Road Map to Holland, Expecting Adam, etc. I am stressed about their situation and want to help more but I have to take a step back and trust that there is a system in place that will make sure they are guided on their path. We can only do so much. Our plate is pretty full.

Joaquin has a full schedule these days. We've taken a step back on the Institutes program while he's been sick the past 5 weeks so we will start that back up little by little this week, adding more and more of his program as he feels better. In addition to the program we do at home, he receives Physical Therapy twice a week, one time at home and one time in the water. He receives Occupational Therapy one time a week. He receives Music Therapy one time a week. He receives Speech Therapy once a month and Hector and I are currently taking a "Hanen Method" class once a week that is teaching us new ways of communicating. It's quite busy. Borderline crazy busy when you add in both boys school schedules with drop off and pick up, Diego's after school art and science classes, Diego and Mateo's gymnastics classes and T-Ball practices and then Diego's swim team starting up at the end of the month....oh yeah...and mom and dad training for a marathon in June.....oh my goodness!!!

Joaquin is beginning to eat again....thank goodness!!! He is also starting to use his index finger and thumb to pick up his brown rice puffs on his high chair tray. He hasn't figured out how to bring them to his mouth but he sure loves picking them up and dropping them all over the floor. These puffs are great and a perfect solution since we can't do Cheerios yet due to the wheat in them. Despite his congestion, Joaquin looks great these days. He looks more and more like a big boy every day. He's still such a baby but I can see him coming into his own. It's so very exciting.


5 comments:

Sharon said...

Wow! You are one busy mom! A few years from now, when all the kids are in school, you'll look back & wonder how you did it all!

It sounds like Joaquin is doing great. You are really fortunate that so many therapies are available to him. Brennan, at almost a year old, only gets 1 hour of PT and 1 hour of ST per week (and I really had to push to get the ST). So, even though it makes for a hetic schedule - you really are lucky to have so many services provided to him. So, hang in there! And best of luck with the marathon training.

Terry Family said...

These pictures are just beautiful! He makes me smile just looking at them. I'm glad to hear Joaquin's feeling better and things will begin to get back to "normal" for you soon. I am surprised to hear of the services you receive. Nathan gets - O.T. once a week (which will be changing to twice soon), speech -twice a week, P.T. twice a week, and special education twice a week. Nathan has therapy everyday and it has made a huge difference for him.

I'm so glad to hear you're training for a marathon.. It's good for your own sanity and it's something you and your husband can accomplish together.

It's amazing what we can accomplish with the right motivation and drive! I'm so with you on that!

Lovin Mama said...

We didn't let Goldie have any wheat either. Until she was over 18 months. I'm not seeing any problems with it now, but I'm keeping a watchful eye. Were you able to find any research on preventing Celiac by delaying the introduction of wheat? I found a lot of conflicting info. out there. Glad Joaquin is feeling better.

Loren Stow said...

Joaquin is so beautiful in those pictures!! I can just see the joy and adventure in his expression!
You are so busy! I don't know how you cope?
I work full time and do photography part time (on weekends) for some extra money and I really struggle to give Malakai everything he needs... Getting home in the evenings is all about feeding, bathing and bonding (not much time for excercises). But I try to make up for it in the mornings and on weekends.
I think that what you are doing for your family is amazing - you should step back, look at your achievements and be very very proud!
Take Care and enjoy the last of your winter (it will soon be our turn for freezing cold days... brrr!)

sheree said...

oh, those pictures are precious!

And WOW...you guys are CRAZY busy! Hats off to you!

Are you avoiding wheat just as a precaution or does Joaquin have Celiac's Disease?