Wednesday, December 29, 2010
Dr. Grant, the neurosurgeon called me before Christmas with the news that not only did the mri show that Shelby's shunt is in proper working order, but that her brain is growing! We knew this from the 18-month head measurements at the pediatrician, but I still harbored a small fear leftover from the radiologist's report that maybe her head was swollen or under pressure. Thankfully that is not the case.
Shelby had bloodwork to check her Keppra (seizure medication) levels and an EEG on December 23rd. We went to see Dr. Poplawski yesterday to get the results. Shelby's EEG showed abnormal epileptiform discharges in two different parts of her brain. This is not surprising since Shelby's brain is not typical, but it basically means that she is very prone to seizures (which we knew). Even though we have only noticed seizures a few times, and not at all since October, the doctor thinks it would be detrimental to take her off the Keppra. This is fine with Trip and me, because Shelby doesn't seem to have any side effects on this medicine. If she starts to have more frequent seizure episodes, then we may increase her dosage.
Dr. P was very impressed with Shelby's development over the past 6 months--especially with how much her cortical visual impairment has improved. We're done with doctor appointments for awhile....yippee! (As you can see below, Shelby is in complete agreement with this sentiment).
Monday, December 27, 2010
Is there any other way to eat hot chicken noodle soup than by the light of your new headlamp?
Exploring her new drum from Papa and BeBe.
Monday, December 13, 2010
Sunday, December 12, 2010
We woke up this morning to a couple inches of slushy snow on the ground. Henry got to walk around in it for the first time. Isn't he cute?
Saturday, December 11, 2010
We went to her 18 month well check-up with the pediatrician on Wednesday afternoon. I think Shelby remembered her doctor experience from the MRI the day before because she cried any time Dr. Love came near her. Anyway, though Shelby has gained weight and is almost to 20 pounds, she is still in the 2nd weight percentile. The good news is that Shelby's head is starting to grow a little bit. Maybe one day, it will be on the charts! It is a good thing she has big hair....
Dr. Love already had the radiologist's report on the MRI. According to the report, one of Shelby's ventricles appeared swollen when compared to the scans from last June. This could indicate that her shunt is slowly malfunctioning. Dr. Love assured us that this was not an emergency situation, and that the radiologist may have even misread it--especially because it is nearly impossible to get the same cross sections on each scan. Since I knew it would be a few days before we would hear anything from Dr. Grant, I called Shelby's neurologist on the way home. He pulled up both of Shelby's brain scans on the computer and compared them. He did not see any significant difference. Now we are just praying and waiting for that same reassurance from Dr. Grant. I don't think he would want to do a shunt revision unless Shelby were actually showing outward signs of a malfunction, which she thankfully isn't. But it is frightening to think of her brain (which has already been through so much) under any kind of pressure.
We've got an EEG and appointment with the neurologist coming up after Christmas and will keep everyone posted on the results.....
Tuesday, December 7, 2010
I actually think this photo is pretty hilarious. It was the best of several attempts. Harding was being impish and uncooperative. Shelbs was simply not having it. I finally had the brilliant idea of bribing Harding with chocolate. That worked instantly. But at that same point Shelby was done (and so were the rest of us). So we had Harding take a picture with just Burney and it turned out completely adorable.
Chocolate is a huge motivator for Harding--he comes by it honestly. I plan to use this to my advantage again in the near future. If only it worked with his little sister...
Shelby is difficult to photograph to say the least. She does not sit still or smile for the camera. We had a snow day yesterday, and I decided to order our Christmas photocards while the kids were napping. As I sifted through all our picture files, I was once again reminded of how impossible it is to capture Shelby and Harding smiling (or even looking at the camera) at the same time. Don't think I am striving for perfection, I just want to get a decent, card-worthy shot of the four of us.
(Picture taken of Shelby Frances last October. Doesn't she look mischevious? This is actually a pretty accurate representation of her personality...the little stinker!)
Sunday, December 5, 2010
Last Saturday, we stopped in the middle of bamboo floor installation chaos and went to a puppet show of Aesop's fables. Harding loved it! Here he is with Momo and Bop.
Birthday dinner at Papas and Beer. Here he is wearing the birthday sombrero that was plopped on his head when all the wait staff sang to him. You can tell how unsure he was about that situation.
Here is Spiderman with his train cake:
Saturday, December 4, 2010
Monday, November 29, 2010
When my grandfather died, I wondered what Thanksgiving would be like without him there to carve the turkey. He always seemed quite stern to me (he was a retired army colonel), but I also remember an amused twinkle in his eye as he listened to all of us talking at the table. Thanksgiving is different now--we have dinner in Arden at my parents' house, more people participate in the cooking, and our extended family has grown by leaps and bounds. But the key elements are the same--family, food, friendship, love and laughter. Plus, we have added yard games to the mix, which is brilliant! I think of Grandpa every year when we sit around the table for the Thanksgiving meal. I know he is pleased that we still get together as a big extended family--that was important to him. He and my grandmother are the reason that I am so close to my aunts and uncles and cousins and I am grateful for that gift.
Sunday, November 28, 2010
Tuesday, November 23, 2010
Sunday, November 21, 2010
I will miss the cheerful yellow though. Here is Trip cutting in with the new color, "milestone". Painting this tall room is quite an undertaking! Harding wanted to "help".
We've been thinking of putting in bamboo floors for a long time. We finally have saved enough money and they went on sale last week so we ordered them. They should come in Wednesday and we're going to install them in the living room and dining room next weekend (gulp)! Thank goodness Trip's parents have done this before and are going to help us.
My sister, Chris is in town for Thanksgiving. She came over with Riley today to watch the kids and give Trip and I moral support as we finished painting. I love these two baby girls!
Friday, November 19, 2010
At Shelby's ortho check-up, Dr. Casey noticed that Shelby's left leg is shorter than her right leg. Apparently it is pretty common in cerebral palsy patients for the weaker leg to be a tad shorter, so that was not surprising. Plus, several family members on Trip's side have one leg that is shorter, so there are probably genetic factors playing into this as well. She may wear lifts to correct this in the future. Shelby's hip x-rays looked great. Her hip socket is deepening nicely. Shelby will keep wearing the hip abduction brace at night for another six months to make sure that her hip dysplasia continues to improve. We also talked about using AFO's (ankle foot orthotics) in the future on Shelby's left foot when she begins to pull up to standing because there is a good deal of muscle tightness on that side. Basically, Dr. Casey and our PT, Beth are monitoring Shelby closely. When she starts crawling and walking, we want her to do it as symmetrically as possible.
Shelby's ophthalmology appointment went well. Dr. Bachinsky was pleased with the huge CVI (cortical visual impairment) improvements she has made. Shelby is still far sighted, but within the normal range for her age, so no glasses at this point. When they dilated her eyes, Shelby's optic nerve showed no further damage than it did six months ago and that is not expected to change. I asked what the optic nerve damage meant for Shelby's vision. Dr. Bachinsky said that Shelby will probably need assistive devices in school to help her read. She also encouraged us to look into pre-braille instruction in a couple years. Learning braille will give Shelby another reading option on days that her eyes are tired. It is frustrating to not know how much your child sees, and we won't really know until she can tell us. But it is so exciting that she sees and that her vision is improving!
I feel so much better going into this wave of appointments then I did a year ago and am incredibly thankful for that. Shelby is doing great, which tells me that her brain is still "happy" as her neurosurgeon, Dr. Grant told us a year ago. It'll be nice to see it on the MRI too though. More doctor updates coming in the next month....
Sunday, November 14, 2010
This weekend was especially full of fun. Friday night, we went to a puppet show in West Asheville. Harding has been begging us to take him to a puppet show, so this free one near our house was perfect. All of the puppets were handmade by the puppeteer.The "scary" puppets were Harding's favorites. He was enthralled by this one's tongue which touched the ground when it came out.
Conveniently, the puppet show happened to have been at an ice cream shop. Yay for me!
Of course Harding chose chocolate ice cream.
We got to have a lovely lunch with Nana on Saturday. Here she is telling Shelby a story.
This picture is actually from last weekend, but the meal Trip made was particularly amazing and worthy of being photographed. Trip loves ethnic foods. He mastered Mexican cooking a long time ago, but is now on a huge Asian kick. The balti lamb pictured below was to die for. We also had boc choy, papaya, and naan on the side.
My only complaint about the weekend is it goes too quickly! Now back to my lesson planning for next week.