I've been asked by a few people if it bothers me that Gavin isn't doing things that a "typical" 8 month old would be doing. It honestly doesn't. He has been through three life intervening operations and had an angioplasty. He has two more operations and another angioplasty with a possible stent placement. I could care less WHEN he rolls over, sits on his own, crawls, walks, talks or runs. I am confident that he will do it all. But we have been given a miracle in the very life of Gavin and the kid has been through some tough battles. I am not in a rush to get to the "next" step...I love every minute of where he is now and the fact that he IS here now. He smiles and laughs and coos and brings so much joy to us. I'm not focused on milestones...I'm just loving the journey :)
Next week, Gavin will go into surgery for an ostomy revision. The surgeon will essentially re-work Gavin's ostomy so that all of his intestines will stay inside of his body and make ostomy life a little easier for us. Gavin's prolapse is so significant that there is a real risk of infection or some type of outside damage to the intestines. He will still have the ostomy with the goal of 20lbs before he can be closed up for good. But his intestines will finally be back on the inside, his hernia will be fixed and the surgeon is also going to clip Gavin's tongue tie. If all goes well, we should spend 2-3 days in the hospital. While I'm nervous, there is a little dance going on for no more pushing intestines in!
On the same day Gavin has surgery, our Rottie will be having orthopedic surgery. Last year, this might of overwhelmed me. This year, I'm using my support system to make sure everyone is taken care of and where they need to be. That translates to: I love my parents!
I'm nervous and scared, as usual, with Gavin going into surgery. But Chris is here and this surgery is about making Gavin better, not saving his life. He is strong and healthy. Stronger and healthier than he has ever been going into the OR. The surgeon today went through the risks associated with surgery and commented that he feels silly telling us since we're pros now, but he had to do the obligatory speech. I don't have as many questions as I used to because I have learned so much in the past year. I feel extremely comfortable with the surgeon and my baby boy is amazingly resilient.
In about a month, Gavin will go to the cath lab at Duke. Before that, we will do a swallow study, a sleep study and a lung profusion study. The first two are somewhat normal in the overall care of kids with DS. Gavin chokes pretty often on his milk, which is most likely a lazy trachea, but the swallow study will let us know if it is something more serious. The sleep study will check for any signs of sleep apnea, but at this point, the test is more an aggressive approach to Gavin's care than any real concern. The lung profusion study will again look at the blood flow from Gavin's heart to both of his lungs. This will determine what will happen in the cath lab.
The cardiologist at Duke is hesitant to put a stent in Gavin. At this age, the rate of growth is so rapid, that Gavin would have to go back to the cath lab several times to adjust the size of the stent as he gets bigger. The hope is that the profusion study shows things are fine, or that an angioplasty may fix the problem. Putting hardware into Gavin's heart will be a last resort. I love how cautious and comprehensive the care is at Duke. They are truly amazing.
At this time, those are our big summer plans. We always stay flexible for the unexpected, but it feels like we are in a good place and staying in that good place for a while. I think to where I was a year ago when I first found out that Gavin had DS, and where I am today. Talk about a blessing in disguise. This little boy is so perfect and exactly as he should be. Who knew that so much fear and doubt could become so much hope, confidence and love?
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