Wednesday, August 18, 2010

2nd Sclerosis Procedure

At the end of another full day here in KC at Children's Mercy. Lucky for all three of us, we are ending it at Ronald McDonald House instead of a room at the hospital. They sent us on our way after 4pm this afternoon to be in charge of the drain tubes and to hang out until Friday when they take them out.
The day started off with blood work taken at the Children's Mercy lab that all turned out good. Man, those ladies that draw blood there are good. One stick, some tears, and 3 tubes later and we were out of there. This was very un-like his experience at St. John's this week - ahhhhh. Greyson's hemoglobin has finally decided to even out and it was a non-issue today and hopefully we won't have blood work again until before the January surgery.
Then up to radiology we went and the waiting started...30 minutes in the radiology main waiting room before the sedation nurse came to get G. Then 2 hours in the sedation room (think small hospital room) where all the doctors came to check out Greyson and have us sign consent forms. The MRI was supposed to start at 11am but they didn't even make us hand him over until 11:30am. What was scheduled for an hour MRI was really a 2 hour MRI since they were scanning both the buddy and G's right arm. After that they took him on to the room where they do the sclero-therapy for a 45 minute procedure all while we waited in the MRI waiting room (much nicer and quieter than the main waiting room). Greyson was completely out and intibated (sp?) for both procedures which seemed to add a bit of anxiety to all the waiting. The good thing was anesthesia gave him some gas to fall asleep before putting in the IV so he skipped out on that pain.
Even though we were without him for so long it was worth it. Dr. Rivard said that this will most definitely be his last sclero-therapy treatment since he has now taken care of all of the large cysts. This type of treatment isn't for the 100's of small cysts that remain. The surgery will take care of those. Dr. Rivard also read the MRI of Greyson's arm and let us know that the lumps and bumps that we can see, and some that we can't, are more cysts much like the ones in his chest. So the plan is to wait until after the large growth is taken off to see how the ones in his are react and then decide what to do about them.
Again, we had excellent nurses and doctors taking care of our little one. We are so lucky to have these experts to help Greyson through this detour in his journey.
We must thank our friends Don and Jackie for having us over for dinner tonight. They made quite a spread and entertained us for the evening keeping Michael and I from going stir crazy in our RMH room all night. The fajitas and fixen's were great but the time hanging out, relaxing, and visiting with good friends was even better. And thanks Jacks for putting the little guy to sleep even after the drain bulb incident ;) you handled it all like a pro!!! Your a natural.
Greyson went through a lot today but started with smiles and ended the day the same way. What a great little guy we have....all the nurses today agreed.
Thank you all,
The Higgins

Saturday, August 7, 2010

Officially 3 Months Old

Today is August 7, 2010 - which officially marks the day when Greyson turns 3 months old and he is doing GREAT. Michael and I, along with a lot of family and friends, have been enjoying every day with him.
As most of you know, babies change all the time and Greyson is no different. He is getting bigger and bigger, almost 14 pounds, and of course likes milk but LOVES apple juice. Seems that he has a sweet tooth like his mom ;) During a visit from Michael's mom this month, she verified that G does look a lot like Michael when he was a baby except for that nose and chubby cheeks, those seem to be mine.
G is getting so strong, holding his head up on his own with only a little head bobbing ;) He gets some tummy time every day and likes riding around in the baby wrap and Bjorn pack. The physical therapist thinks he might be ready for a Bumbo seat soon so we are on the look out for one. We're hoping some time sitting up will help with the bald ring that has formed around the back of his head where he rubs his head back and forth in his bed. Hope it grows back soon. He is going down for naps pretty well these days and is sleeping for 5-6 hours at a time during the night.
He has really started to get animated with lots of smiles and more jabbering all the time. G loves to stick out his tongue and chewing/sucking on his hands, occasionally gagging himself. He even started to laugh a bit when Grandma B was playing with him on a recent trip to Columbia.
We will be heading back up to Children's Mercy in 2 weeks for his second sclero-therapy treatment and an MRI (Aug 18-20). His buddy has continued to shrink some on the top and we hope the next round works as well. We will add updates when we get to KC so that everyone knows how things are going.
Enjoy the rest of your summer. Stay cool ;)