Sunday, January 24, 2010

On The Move...

So he's not quite crawling...but look at him go!

He is half dressed because he had rolled away from me when I was trying to get him undressed for his bath...little turkey!

Sunday, January 17, 2010

If I could go back in time to when I received Joey's Diagnosis

The question was recently posed to me...If I could go back in time to when I received Joey's diagnosis what would I tell myself? I had never really thought about that before. Anyway, I thought I would share my answer...maybe someone who is about to have a baby with Ds will see it and will be encouraged by it.

Me then (three weeks before I went into labor)...

If I could go back in time to when I received Joey's diagnosis I would tell myself first and foremost that everything is going to be ok. Do not to try and worry about his future, developmental milestones or anything other than getting to know and love this baby. I just remember my mind racing and jumping to various things and trying to worry about everything at once. If I could go back in time I would tell myself to stop, and just take him in. Look at his little fingers, his little toes, those eyes looking into my eyes and searching my soul and stop trying to worry about next week, next month, next year—you would not do that with any other baby. I would tell myself just focus on the fact that he is a baby first, your baby, and although he may have some health issues, he is just like other babies in every other way. He eats, sleeps, cries (ok, not Joey), poops and needs your love.

I would also tell myself not to worry about other what friends and family might think about him and not to worry that they will not love him as much because of the Down syndrome. Such concerns are so unfounded. Your family and friends will love him just the same as they would have if he had not had Down syndrome. In fact the family, friends and acquaintances that matter will rise to the occasion. They will want to learn about Down syndrome and may even take even more interest in him than they would have otherwise. We will make new friends, friends we know that will be with us for life, who share the common bond of having a baby with Ds. These friends understand our fears and concerns and they will be there for us to give us the emotional support and wisdom we need to raise this baby. Lastly I would assure myself that God would not have given us Joey if we could not handle it. We were chosen for this baby because we can and will be good parents to him. I would remind myself that as with any other challenge in life, you will find the strength you need to deal with anything that comes your way. And again everything IS going to be ok.
The night Joey was born...
A week later...

Still cannot believe it has almost been a year! I feel like we have learned so much this year.

Wednesday, January 13, 2010

Almost Wordless Wednesday (Joey's favorite time of day)

Yep... it is bathtime. And thanks to grandma showing Joey at Christmas that he can roll over onto his belly in the tub, we cannot keep him on his back for even a second. Check this silly boy out!

Friday, January 8, 2010

Eleven Months Ago Today...

our baby Joey made his enterance into the world. I am in shock over the fact that we are one month shy of his first birthday. I am slowly forgetting what life was like without Joey and I cannot imagine it. Eleven months ago life certainly did not have as much meaning or purpose.

At eleven months age Joey is still working hard at trying to crawl. He gets up on all fours and rocks and throws himself forward or he inches forward like a little worm. He also likes to do push ups and the downward dog yoga pose. In fact he almost goes into a side sitting position from the downward dog position. He is also gaining better trunk control and I am hopeful that he will be able to sit better independently by his first birthday.

Joey's greatest accomplishments are in the are of eating. Like his mommy and daddy he has a real passion for eating. He loves trying new foods of all consistencies and textures. We recently tried a jar of turkey, rice and vegetable stage 3 baby foods and he did wonderfully. He also tries very hard to self feed. I just love watching him tear apart frozen waffles and frozen mini pancakes, breadsticks and pizza crust. He can sometimes pick up small pieces of cereal and he almost gets it into his mouth. He is certainly motivated to be feeding himself.

Here he is trying a french fry. (I know bad mommy)

The area of development which I believe is going to be most difficult for Joey is speech. He babbles more and more all the time but is still not that "talkative." He is presently going to oral motor therapy once a month. While I am not sure it does anything for him at this point in time, we will stick with it because we want to make sure we are doing everything possible for Joey to assist him in this area of development.

It seems like Joey is constantly being evaluated. It is difficult to see evaluations of Joey placing him at developmental ages lower than he is. I know that it "is what it is." We are doing everything we can for him, and he will do everything he needs to be doing eventually. Although I know this... it does not make it any easier.

I think the hardest of these "evaluations" was the report I recently received from Joey's MRI that was done at the end of October to rule out a tumor as the cause for his nystagmus. The opthamologist handed it to me in an envelope at the end of our appointment last week so I did not get to review it until we got home and I did not get to ask her any questions. The report indicates that "demylelination pattern may be slightly less than expected for a chronologic age of eight months, more similar to a six month chronologic age, based on the appearance fo the anterior limbs of the internal capsules." What the heck does that mean? I googled some of the phrases but was unable to find any helpful information. What I am guessing, and I could be wrong, is that this is why he has developmental delay. Is this issue with chronological age of the brain something that is typical with Down syndrome? The report also states "Of note, the maxillary sinuses appear opacified." Again, what the heck does that mean? Once again a google search was of no assistance. I have so many questions I am, for once, anxious for the visit to the doctor so I can get some more information on this. If anyone knows anything about this I would appreciate the information.

Saturday, January 2, 2010

Christmas Cookie Party With The SacTown Babies

A few weeks ago Jen had a Christmas Cookie and Coffee party at her house with the SacTown Babies and Mommas with whom we have become good friends over the past year. Here are some of the photo highlights from the party. It was an absolute blast and I hope there are many more get togethers like this in the new year.

Joaquin greeted Joey with a big smooch.

Joaquin checking out Maddi who joined us all the way from Washington.

It was nice getting to meet Maddi and her mom. Joey likes the ladies!

Joey, Joaquin and Maddi getting aquainted.

Our really good friend and neighbor Darin came along to play Santa for the kiddos. Thanks so much Darin! The kids really liked getting to meet Santa (some of them for the first time). I don't think they were old enough to be scared of him! Next year I expect there will be a little more "stranger danger" at being handed over to Santa. Looking good Santa!

Joaquin saying hi to Santa.

Joey went to Santa no problem. I wonder if he recognized Darin who we hang out with all the time and who Joey loves.

Joey is thinking just let me get my hands on that beard!

Santa with then 5 day old Delilah and new mommy Amy.

We were so happy that Amy was able to bring Delilah out to meet her new friends! Little Delilah is so beautiful and we cannot wait to watch her grow up and get to know her better.

Maddi with Santa Clause.

Joey loved Santa!

Joey and John Michael hanging out under the tree.

The whole group gathered around the tree for a photo op. From left to right we have Joaquin, Maddi, Sheridan, Cody, Gracie, Gabby, Eva, John Michael and Joey.

Joey playing with the ladies Gabby and Gracie.

Miss Gabby looking oh so pretty in her Christmas dress.

Gracie and Maddi with Joaquin who was looking very handsome.

Cody showing everyone his dance moves.

Beautiful Gracie

A beautiful picture of Joey that I got from Facebook... not sure who took it but I love his eyes in this picture.

Unfortunately the batteries in my camera died so this is all I got. We did a gift exchange and Joey got a set of Goosie flash cards (from Lisa and Sheridan) with pictures of all his friends on them. It was such a cute gift and we love them! Thanks so much Lisa!
It is always so much fun getting together with this awesome group of Mommas and Babies. This group has provided Joey and I with so much support this past year and we do not know what we would do without you. I hope everyone had a wonderful Christmas and a Happy New Year! Joey and I cannot wait to see everyone again in the new year!