Friday, August 8, 2008

Up for the Challenge

When we had first learned that this baby may have Downs syndrome, we knew that we would face new challenges like we hadn't before but there is really nothing that can prepare a parent for the new demands placed on them in having a baby with Downs syndrome. When our other children were this age, it was very physically demanding but with John, it is physically and emotionally demanding.

Everyone understands the physical demands of having a new baby but it can be emotionally demanding also because you have to think for them also. In comparison with my other children, when they got hungry or were poopy, I could rely on them to wake up and scream at me. With John, I can't always be assured that he will do that so Joy and I need to monitor when it is time for him to eat. And that is partly why we are in the situation that we are in now - because it has taken us awhile to learn that.

When he came, we knew that breast feeding would be difficult for him which is why we chose to delay his circumcision until after we had established some type of pattern. We didn't want to throw too much at him at once. As I reported at the last posting, we went for the circumcision yesterday and we are still glad that we made the decision to delay it. We had so much trouble putting weight on him the first week and such a difficult time yesterday after his circumcision with him not being interested in feeding that the two together wouldn't have been a good combination for him and might have delayed him from coming home when Joy did.

We got home from the circumcision around 2:30 yesterday afternoon and he slept all of the afternoon. I had class last evening from 6:00 until 10:00 so I wasn't here to help Joy. But before I left for class, we had discussed the challenge that we faced and our plan of attack so she was ready - she was exhausted but she was committed to the plan.

Joy was diligent to nurse him and give him supplement last evening while I was in class every 2 hours. She also kept him awake in between feeding times by providing the stimulation of music, lights, and toys. We received one of those small overhead jungle gyms by Fisher Priceas a shower gift and it has been very useful. The constant stimulation of lights, music, bright colors and the different textures on the mat provide for him good motivation to move his head to turn and look at things and to reach with his arms.

I also plan to go today and purchase a baby scale or a food scale will work so that we can monitor his weight on a daily basis. By doing this, we will know whether or not the current plan is working or if we need to go to plan B. If you find yourself in this situation, it will be important to keep your eye on the goals which are to get calories down him and to preferably do it in a way that works his facial muscles the most.

In talking with others, we are also reminded that there is always someone that has it worse than we do. We need to thank the Lord for what we have instead of grumbling for what we do not have. John will make it through this hurdle and come out a stronger baby. Joy and I may be a little bit weary but we are learning patience and love like we never knew with our others.

Thank you all for praying for us. Your continued support mean a great deal to us as we learn how to best meet his needs. It would be difficult to go through this without you there for us.


jpaulga said...

Let him sleep. He is going to be wide awake when those four kids get home and take back their house!!! Stay strong. You and Joy are doing awesome.

boo4baby said...

Praying for you, bro. John is going to get the best of care with you two. Can't wait to see you on Monday. We spent today at the pool and everyone is tired, but doing well. Love ya!