More Details...

Good morning. I realized after my last post that I omitted some details over the last few weeks...

Jonathan had his four month check up two weeks ago. He weighed in at 11 pounds! He got his shots and had his next to last synagis shot two days after his check up. The synagis shot protects him from contracting RSV.

Jackson is using the potty on a regular basis now. About a month ago or so, we had a "Come to Jesus" talk. I told him he could use the bathroom and it was time he started. We spent one day where we went every hour, then every 30 minutes, and then every 15 minutes. When he would go in his pants immediately after an attempt, I knew it was an issue of control. Once he had success, he started wanting to go and now accidents happen only on occasion. I think a big part of his success is tied to Jonathan. I kept making a big show of telling Jonathan how big his brother was, using the potty and wearing underwear. Each time Jack went, I would show Jonathan and make a big deal. Once I forgot to praise Jackson in front of Jonathan and after using the bathroom, Jack said, "Mommy, tell him what I did!" I think he enjoyed impressing his little brother.

Jackson is still stuttering so I am taking him to a speech pathologist on Monday. Hopefully the stutter will still be there so she can tell us if it is a big deal or not. I don't think it is, since it comes and goes. However, we want to be sure and not ignore something that might be significant.

I am so grateful for how loving Jackson is with Jonathan. He wants to lie down by Jonathan constantly, help feed him (when I use a bottle:)), give him toys, kiss him, and show him how to do things. Jonathan reciprocates by smiling, laughing, and talking. It is so neat to watch.

We are rarely feeding Jonathan breastmilk with bottles. There is no need to document how much milk he is getting now that he is gaining weight. He is only nursing unless we are out running errands, at church, etc. The pediatrician and dietician are impressed with his weight gain on breastmilk alone. He is developing well considering he had open heart surgery less than two months ago.

Jonathan's scar continues to heal beautifully. Before I went to Columbia last week, Jamie kept insisting one place was not healing correctly. There was a white scab - it looked like a thick piece of skin that was not fully healed. I said it was a scab and not to worry about it. The pediatrician agreed with me. Jamie was bathing Jonathan one night and kept playing with that piece of skin. Finally, something popped through - it looked like fishing line. It was a souture that was irritating the skin just below the scab. Jamie had been right all along - the souture was irritating the skin and needed to be clipped. I called the cardiologist's office and spoke with a nurse. She walked me through the process and said I could do it. I opted not to. I figured if I could, the pediatrician could. I did not want to take chances on causing some kind of infection because I didn't sterilize something enough. I took Jonathan in and the pediatrician pulled the souture as tightly as she could and clipped it as closely to the skin as possible. Jackson saw what was going to happen, heard Jonathan whine, and said, "I'm worried!" The doctor said, "Do you want a sucker?" That calmed him down.:) The child is definitely my son - he finds immediate comfort in food! Since Jamie freed up the souture, it looked less red. It looks even better now that it has been clipped.

Yesterday we went to the Bell Center. Jonathan is rolling from his tummy to his back. With very little help, he rolled from his back to his tummy. He is holding his head up high while on his tummy - great considering all the work done on his chest. He is chattering like crazy, batting his arms, kicking his legs, scooting across the floor in an attempt to crawl, and so much more. I am simply grateful for these things! They give me hope.

We are functioning - we have bad days and good days. For the most part, we are faring well. We love our boys. We still would not have picked this situation. Please pray for us. Pray for Jackson's stutter, Jonathan's weight gain and development, and our outlook on the future. I want to be the parent that is positive and that the DS is a component of our family but is not who we are.

I will post pictures later!

Julie

Update

Hello! It has been more than three weeks since my last post. I think I became complacent once Jonathan's surgery was over and he seemed to be in the clear.

Thanks to so many of you, again, for your prayers. I was at home in Columbia this weekend and was able to see many people in my hometown neighborhood and at church. It had been seven months since I last visited and I was overwhelmed with the number of people who said they had been praying for us.

To update you, Jonathan is doing great. He is rolling from his tummy to his back, holding his head up, trying to sit, can track objects, batting at things, holding toys, trying to crawl, loves to eat, and is sleeping all night. Jackson still cannot get enough of his little brother and I am so thankful for that! He is such an example to me of how to love - unconditionally.

I tried to post some photos but was unable to so I will try again soon.

Julie

Pictures

Hello, everyone. I thought I would attach some pictures. Some could be termed as "gross" so just know I warned you! I hope they turn out okay - I have had a hard time figuring out how to put them in next to the correct descriptions.

Jamie and I attended the Guild Gala this weekend. We went to dinner at a couples' home where they honored Jonathan. It was so nice and we were thrilled. Our dinner was Russian-themed. After dinner we went to the ball and saw many familiar faces. I have not dressed up like that in so long! Jamie and I agreed we ought to do that more than once a year. Thanks to Bill and Suzanne for babysitting the boys so we could go!

We are doing well. Jonathan is hard to resist and makes it easier to accept. He is eating more than ever. He is laughing out loud without being tickled. He smiles all the time - especiallly when he takes a bath or gets his diaper changed. The boy likes to be clean!

Jackson still stutters on occasion but nothing like before. Thank you for your prayers.

This is what Jonathan's chest looked like right after the surgery. I was giving him a bath. The two holes on the bottom left and furthest to the right are where tubes went in to get to his heart. The cut below his incision is where a drain tube was. You can kind of see the staples on his actual incision.



Jackson and Jonathan in their PJs. Jackson just loves Jonathan so much. He always asks where "Baby Jonathan" is and wants to kiss his hands and head. I have to work to keep him off of Jonathan. He is so loving and affectionate! He is very proud of Jonathan and I cannot think of a better big brother. I am so thankful Jackson loves his little brother so much.


Jackson commiserating with Jonathan. He has his own "scar," too! You can tell that Jonathan's skin has not really seen the light of day yet.:) I thought it would be fun to give Jackson some "scar" treatment. He was thrilled. At first he was scared when I mentioned it, but then he thought it was neat.






This is Jonathan a few days ago. Amazing how this child is healing up so quickly!

No More Staples!

Jamie and I took Jonathan to the cardiologist on Wednesday. Without his diaper, he weighed nine pounds, 11.6 ounces! The fluid is still gone around his heart so we were allowed to take him off his diuretic. The doctor was pleased with his progress - level of activity, weight gain, alertness, etc. That is twice we have left the cardiologist's office with good news!

When Jonathan first came home, we were giving him meds three times a day (five in the morning, one in the afternoon, and four in the evening). We had a rubric to keep it all straight. Now, we are simply giving him one-fourth of an aspirin daily to prevent blood clots. Oh, it is so much easier! Not only that, but now his chest is stapleless! The doctor used a staple remover and just popped them out. I think it pinched close to the top because Jonathan howled for quite some time after "the event."

I will post pictures later. I tried to tonight but was unable to upload.

Julie