July Check-Up

Greyson had a GREAT check-up with the doctors at the Vascular Anomalies Clinic this afternoon. He was the center of attention and they are all pleased with his progress and how big he is getting (24 in long, 13 pounds 6 ounces). We had a couple of shifts of doctors come in and out; thinking 7 doctors, 2 nurses, 1 nurse practitioner, and 1 medical social worker. It was a full room for sure.
They are very happy that we are seeing some shrinkage with the growth and still plan on doing another sclerosing procedure as scheduled in the middle of August. Dr. Rivard, the radiologist, thinks that he will have taken care of the majority of the large cysts then and this treatment doesn’t work on the small ones so he will be finished. The plastic surgeons, Dr. Jiang and Dr. Rast, want to see Greyson back around the beginning of October to begin planning the surgery to remove “Buddy”. Dr. Jiang wanted us to know that he will probably not be able to remove all of it but will get the majority and Greyson may have to have other surgeries in the future. We are planning his surgery to be in mid-January but don’t have any dates set in stone as of yet.
We have noticed that Greyson’s right arm is swelling a bit and there are some lumps and bumps that have been their all along and some that have shown up along the way. The doctors agree that it might be time to look into those and Dr. Rivard will do an MRI to see what is going on when they have Greyson knocked out for the sclerosis. We like the idea of killing two birds with one stone only having to put him under once for multiple tests/procedures.
The doctors at Children’s Mercy are so great and supportive. We are very lucky that Greyson found his way here into their care.

Almost 3 Months

We can’t believe it is already July 25 and Greyson is almost 3 months old. No longer will we have to count weeks to figure it out how old he is, now it’s months. You all won’t believe how much he is changing on a daily basis growing and getting more of a personality. He has made his first trip to the library, gone out on the boat, and is going for a sleep over tonight to Gramps and Grandma B’s (with us).
Greyson’s legs, arms, and neck are getting much stronger and he can hold his head up on his own pretty well for short periods of time. We can now carry him facing forward in the baby carrier which he loves because he can see everything. He spends some time each day in his play yard looking at himself in the mirror and smiling a lot and he “talks” to the fabric on the quilt in his bed and above the changing table every chance he gets. He has discovered his tongue and sometimes he and Michael make faces at each other and stick their tongues out. We have found a couple of ways to get him some “tummy time” and this seems to be helping with muscle control although he does have a hard time getting his right arm out in front of him, but he will get it soon enough.
Friday brought Greyson’s first visit from a Special Instructor (Special Ed Teacher) from First Steps, a developmental intervention program. We are lucky that he qualified for services from the Special Instructor, Sharon, 2 times a month and from a Physical Therapist, Suzy, 1 time a week and the cool thing is that they are sisters and can work together to help Greyson out. We know that his “Buddy” is going to slow him down a bit but with their help maybe we can find ways to work around it and keep him moving.
Over the past few weeks we have continued to have his blood work done and while it is not as high as we would like it is not as low as it was when he was in KC for the last procedure. We hope the doctors agree that it is ok and will call off the weekly heel sticks. If he could tell us I am sure he would vote for no more visits to the lab although the ladies are very sweet to him.
Tomorrow he visits Children’s Mercy for a check up with the Vasucular Anomolies Clinic doctors. We will get to see what they think about the changes in his growth and decide if it is working well enough to do another round of sclerosing in the middle of August. I think “Buddy” has changed (seems like it is sinking in a little) a bit more since the last visit but will be interested in seeing the pictures they took to really see the difference. We hope that they will be able to give us a better idea of when his surgery might take place and how long to expect his recovery to be. We will post an update tomorrow evening to let you all know what the doctors have to say.
We hope you are enjoying your summer and thank you for all of your well wishes, messages, and visits. We look forward to more.

8 Week "Birthday"

Greyson is 8 weeks old today and doing GREAT. Michael and I (along with lots of family and friends) have been enjoying every minute with him and have had a chance to see him grow.... and my, he has grown. Not sure how big he is now but he is starting to grow out of clothes (getting longer and putting on the ounces ;) As you can see from the pictures in the gallery, his cheeks are filling out.

We have seen a tiny bit of shrinking in the growth but not really that much. The full results of the procedure are often not seen until 8 to 10 weeks out. He has had blood work done the past two weeks and we have seen a steady increase in his red blood cells so that is promising. Only 3 more weeks until we go back to Children's Mercy for a check up which means 3 more blood draws, but the ladies that take his blood in Joplin are getting pretty quick at it and they love him to death when he comes in.

We hope you all enjoy the holiday weekend. Take some time to relax and spend time with those you love.