Wednesday, December 10, 2008

It's Been Awhile

It's been a while since I have posted and although I have missed posting and reading the blogs that I read, it has been a good break for me. There have been many changes with John that I can't get it all down on one post.

First, John continues to do well with his development. He was 12 lbs. 6.5 oz last week when we had him weighed. He has his 4 month appt. tomorrow with the Doctor (and no, we don't use Mom as our personal Doctor since she is a little less objective). So we will see what he has to say. Although Joy and I use a Physical Therapist and Doctor outside the family to see John, we still keep close tabs on his development by way of weekly weight checks and daily Physical Therapy.

Speaking of Physical Therapy, I am very pleased with John's progress. Things that we have been working on are gaining full neck extension, strengthening his shoulder and back muscles. Even though John is doing great at holding his head up and has been for about a month, it is still difficult for him to gain that last few degrees of full extension. To help him with this, we use the airplane.

The airplane is where I hold him horizontal in the air in front of my face and talk or sing to him. As he holds his head up to look at me while in this position, he fully extends his head while extending his arms and legs also. This not only builds muscle in the back of the neck but also builds muscle in his upper and lower back which will benefit him as he continues to learn to sit.

That's right, we are working on sitting so I bought him a Bumbo chair to help with this. This chair has been a great tool for him because it gives him just enough support that keeps him sitting in the chair but some independence to where he has to work to keep himself upright. We have found this chair to be especially helpful in comparison to other chairs because he can use the pommel to push himself upright. I understand that these are around $40.00 but I was able to get mine off Ebay for half the price.

Another thing that we have begun working on using a spoon to eat rice cereal. This is something that we actually started about 3 or 4 weeks ago with an empty spoon just to get him used to the feel of the spoon in his mouth. Now, we have introduced rice cereal on the spoon and it is actually going pretty well. The first week, he didn't act very interested much less knowing how to use his tongue. But now he is more interested and opens his mouth for the cereal.

Although I am feeling more and more like I am drowning in a sea of baby land and would like very much to get back to work, Joy and I remain committed to giving John the best start that we can give him. Right now, we both feel a little uneasiness about leaving him on a full-time basis. We have a few ladies that have kept him on occasion for us that are willing to keep him some for us so we are considering our options. To tell you the truth, John and I have developed such a bond, it is difficult to even think of leaving him. To see him light up when he sees me or hears my voice just really warms my heart.

With all of the progress that John is making, our hearts continue to be very thankful to Him for blessing our lives with such a healthy Down syndrome baby and for giving him the strength and motivation to keep working. Thanks for all of your prayers and concern for John. He is truly blessed with people who really love him both here in this house and friends and family. Thanks again for reading.


Andy and Ellen Stumbo said...

John is so cute. I love that picture of him in his Bumbo. Nichole was about that age when we got it too. She sat perfectly by 8 months.
You are giving him an awesome start! Right now I wish I was a PT because she is compensating movement due to the low tone and I did not see it coming, I would have, if I was a PT :)

In response to your comment, all I have to say is, John is so little! He is only 4 months old. Sometimes we have to convince ourselves of God's truth, because we seem to doubt so much.

I do not know how much you have read in our blog. I have some posts on my personal journey, I have tried to be very honest.

Nichole's diagnosis brought things in me that I never knew were there. I was faced with my wickedness, selfishness, and plain sin. I had never experienced it that way before. I had never been so raw. My thoughts were disturbing even to me, as I realized how indulged I was with myself, my dreams, my ideas.

But God :) Many things happened those first few weeks, those first couple of months. I came down to my knees, humbled and broken. It turned out that Nichole was becoming the greatest vessel of God's love in my life. A tool crafted by God, to restore those broken places in me.

I thank God that He who began the good work in me, will carry it on to completion. And sometimes He chooses to do it by what seems broken in this world (a baby with Down syndrome.) I am thankful for forgiveness, I am thankful for grace. I am thankful that the God of the universe loves me.

I am thankful for God finding me worthy enough to care for His child.

Hang on, you are in the ride of a lifetime, and I am sure you have come to discover, you will never be the same.

Jeanette said...

It's good to see your post. I love the photos of John. LOVE the hair! We used the Bumbo. It was great for Syd's postive and back muscles. You are doing such wonderful things for John. Early intervention is so important. I couldn't stay home with Sydney until she was 9 months old. It made such a difference when I was able to stay home with her and work with her.

Melissa said...

Your little boy is so cute! My son Dillon LOVED the bumbo chair, it's great that you got it 1/2 price!!! Good job with the spoon feeding...YAY!
Happy Holidays!!

Anonymous said...

Jay, I think we all drown in a sea of babyland at one point or another during the course of raising our children. I think that being a SAHP makes the likelihood of that happening much higher. But, this too shall pass and you will look back and be so glad that you spent this time with John despite your mental and physical exhaustion.

As you know, I often look at these things from the same perspective of your wife. And, if Joy is anything like me, she possibly doesn't verbalize her thoughts to you. What you are doing is a gift not only to John but to Joy, because with you home caring for your son she can take comfort in knowing that he is in the best possible hands each day. That amount of comfort is immeasurable to a working parent. No care-provider can compare to a parent. Her guilt and burden is lightened so much because you stay home. Take comfort in that.