5 Months & Dr. Appointments

Today was Greyson's appointment with the doctors at Children's Mercy to begin planning his upcoming surgery. We visited with the radiologist, dermatologist and plastic surgeon along with all of their nurses. They checked in and were all very pleased with the shrinkage in Greyson's growth and the way his skin has changed. Dr. Jiang, one of the plastic surgeons that will do the surgery says that they are ready to plan and see what they can do for Greyson. Their staff is working now to try and get this scheduled and we will let everyone know as soon as there is a date. There are a lot of individuals and resources to coordinate so this could take a little time.

One of the biggest thing discussed was what to expect after surgery. The doctors want to make sure we understand that even after surgery, the chance of the growth reoccurring is possible and it is likely that he will have to have future surgeries as things progress. It seems to be the nature of this kind of "beast" and we will have to see what happens. We also talked about what to do with the spots in Greyson's right arm. For now we are going to wait and see how taking off the larger growth will affect his arm.

Greyson turns 5 months old tomorrow...he now weighs 16 pounds 2 ounces and is 26 inches long. He has gotten so strong and holds himself up well when we carry him. He is still working with the Special Instructor and Physical Therapist. They are trying to teach him how to roll over and how to sit up and he is getting so close on each but the weight of "buddy" presents some challenges.

Greyson jabbers a lot, smiles, and sometimes giggles. He is very friendly and especially loves his TV friends. He still likes to go on runs with me and will be able to continue this into the fall as soon as we get the weather shield for the stroller. This weekend Greyson is having a sleep over with my Dad and Beck when Michael and I go out of town for the night. He is also going to get to try rice cereal for the first time and get to go to his first race to see me run. Next weekend will bring on his first Maple Leaf Parade and trail ride at Gramps and Grandma B's. And he will have his first Halloween at the end of the month.

We look forward to seeing or hearing from you all. Happy Fall!
Brooke (Michael & Greyson)

4 Months Old

Greyson turned 4 months old on September 7. Wow, how time fly's. Things have gone really well since the last sclero-therapy treatment although we haven't seen much shrinkage he is doing great. Greyson continues to receive care from his Physical Therapist, Suzy and Special Instructor, Sharon. He really wants to roll but just can't get over. He loves to suck on his hands and uses his hands to grasp toys (his left more than his right). We are working on getting him to prop himself up on his arms when laying on his belly and hold on to toys with both hands. He likes to lift his legs up and kick them all around and has even found his feet a few times.

Greyson had his 4 month check-up today with the pediatrician in Joplin and is growing as he should be. He did have to get shots today which he doesn't like (obviously) but he didn't cry much and didn't seem to feel bad after like last time. He weighs 15 lb 8 oz and is 25 3/4 inches long. That puts him in the 40th percentile for weight and 60th percentile for length.

We have had a chance to visit the lake a few more times and Greyson has enjoyed riding on the pontoon boat now that there have been some cooler days. He traveled with me to Columbia one last time for a week and spent lots of quality time with Grandma Diane. We even took him for his first swim in a pool (he acted like it was nothing - a bath seems to be more fun). Last weekend we went to Wichita to watch his cousins play football and soccer and visited lots of family. One thing we have figured out is that he gets really tired of the car bed and hot as well....and when he's done he let's us know loud and clear. We don't see any long trips in the near future and are working with the car seat lady from Children's Mercy to find an alternative.

Greyson's next appointment is scheduled for October 6 with the plastic surgeons to plan his surgery in January. We are looking forward to an uneventful and quiet fall.

Finally, I figured out how to get the video clips we have been taking of Greyson online for you all to see. Just visit this link and you should be able to see both our mobile uploaded pictures and videos. http://gallery.me.com/higginsb#100150

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

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 ;)

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.