Today was the big Christmas Concert. The girl loved dressing up in her fancy dress!
The girl joined many of her friends as they played beautiful music for family and friends. Some of the highlights.
Very Excited!
Lots of love here!
Lining up to go on stage
“Up on the rooftop”
She even made the big screen!
Honestly the best music I heard today was “Mommy, I love you!” Beautiful music indeed.
The girl is so excited about Christmas! She has to redecorate the tree daily, and is loving our Jesse Tree celebration each night!
She’s so joyful, and we are happy that she’s doing so well!
The girl’s mom has 3 more weeks before a break. We have one visit to Children’s this week to see the urologist. I think that the medicine is making a difference. I’m not sure what that means…but thankful that the medicine helps with the accidents.
I’m writing this post as I listen to our little freight train in the other room. We think that losing the tonsils will help a lot!!! When she actually gets a good nights sleep, she’s going to be unstoppable. We will have to Wait until the day after Christmas for that sleep (surgery 12/26). She’s not going to sleep until then anyway. She’s just too excited!!!
Kp
We are thankful for so many things!!
1. Prayers and love of friends and family
2. Good Health!!
And
3. Chocolate Cake (says the girl)
Thank you to everyone who has prayed for us and encouraged us this year! God has blessed us richly through your love to our family!
I’ve heard that doctors are told that when they hear hoofbeats that they should look for horses instead of zebras. Look for the common, not the rare.
When a kid with a history of tethered cord starts falling and having trouble with weakness and incontinence, the obvious concern is that the cord is re-tethered. Re-tethering is pretty rare (~ 2% according to Ogiwara et al.), but we still couldn’t think horses when this rare possibility was stampeding towards us. We have just spent about a month testing everything that could be tested on the girl. Now we know that we are dealing with horses! We finally have some tentative answers, and there are no zebras involved…
The tentative answer is unexpected. The MRI of the spine showed some large adenoids (that had grown back after they were removed 2.5 years ago), large tonsils, and large lymph nodes. We visited the ENT yesterday and he said that the girls tonsils were almost as big as they get. He was concerned that she has sleep problems that could be on the verge of sleep apnea. She has lots of symptoms of sleep disordered breathing:
The most obvious is snoring…she sounds a lot like this:
The girl has never been one to sleep well, and we kept putting off the sleep studies that have been suggested over and over. She just has so many doctor visits, we didn’t want to subject her to any more. We never imagined that the problems sleeping could be serious…I mean, I’m seriously tired all the time, but for the girl, we didn’t realize it was that big of a problem.
It turns out that sleep apnea is a pretty serious problem. About 2% of the child population has sleep disordered breathing (American Academy of Otolaryngology), and this can lead to problems with behavior and learning, enuresis (bedwetting), slow growth, obesity, and cardiovascular issues (American Academy of Otolaryngology). Removing the tonsils and adenoids is the most common and effective treatment for sleep disordered breathing and obstructed sleep apnea.
We are optimistic that the tonsillectomy will help her sleep, and once she is actually resting she will be stronger and improve in all of the ways that she did immediately after the first surgery.
Sources:
American Academy of Otolaryngology. 2011. Fact Sheet: Pediatric sleep disordered breathing / obstructive sleep apnea. http://www.entnet.org/HealthInformation/Could-Child-Have-Sleep-Apnea.cfm. accessed 16 November 2012.
Ogiwara, H., A. Lyszczarz, T. Alden, R. Bowman, D. McCLone, and T. Tomita. 2011. Retethering of transected fatty filum terminales. Journal of Neurosurgery Pediatrics, 7:42-46.
We have had a very busy week. This picture sums up how we all feel. We still do not have answers about the symptoms , but some blood work ruled out some scary possibilities! There are more appointments next week, and hopefully we will get some better ideas about what’s going on. For now we are going to get a little rest!
The girl saw the neurosurgeon today. We had lots of questions when we arrived, and we left with more questions. Of course we were a bit concerned that the cord re-tethered. We did learn that the cord is fine! No indication whatsoever that the cord is the problem.
There were no explanations for the falls and incontinence. Because the girl is weaker on one side, the doctor ordered a brain MRI. We will do that next week. It’s without sedation…should be easy. So, this is step one in the plan.
Step two is to follow up with the urologist and stay on new medicine for the bladder.
Step three was unexpected.
The very thorough radiologist looked at everything and noted in the report that the girl has “enlarged lymph nodes particularly in the suprahyoid internal jugular chain….bilateral tonsillar enlargement and partially visualized adenoid hypertrophy.”
I looked up “hypertrophy” and it means enlarged. Hmmm…the girl had her adenoids removed 2 years ago. I guess they grew back?
So, step three is that the neurosurgeon will send the MRI to an ENT at Children’s so we can get an opinion about infection or other things that could cause the swelling. Infection can make a girl fatigue and fall…but probably doesn’t explain the incontinence.
That’s the plan! At least we have one!
Today was fall cleanup day! The girl and her dad “braked” the yard! 
Of course, she then proceeded to “unbreak” the yard!
The MRI was this morning. There are some perks. Child life brought an iPad with much better games than mommy has:
The girl did great with the sedation and the test took about an hour. She was really “wobbledy” and “didn’t feel good” when she woke, but she managed to eat crackers!
She ate her special cookie on the way home proclaiming “it’s a bad ghost so I have to eat it!”
Now we are home and the girl is trying to convince mommy that she won’t fall if I let her play. After a sandwich enjoyed by the girl and the BAD puppy, she is now sleeping off the sedation.
The mom is wearing some special socks that remind her of friends and prayers and God’s faithfulness.
We will talk with the neurosurgeon next week. Until then we will run like a rocket and have as much fun as we can!
We have spent the fall visiting every doctor that the girl sees at Children’s. She has these little issues that keep creeping up. First we had some changes in the way that she runs. We had muscle testing at Children’s (and of course her PT has been watching) and until recently she seemed strong, just uncoordinated. She started falling and having some accidents again in early September. We had the routine muscle testing (again she tested strong) and bladder testing (CMG). The CMG wasn’t normal, but it wasn’t anything like pre-surgery and it wasn’t terribly alarming. The urologist put the girl on a medicine that would control bladder spasms, and suggested a different laxative to see if we could get past the accidents. The Dr. was concerned about the accidents and walking issues, and encouraged us to call the neurosurgeon. The neurosurgeon ordered an MRI and a follow up sooner than the previously scheduled December MRI. So, the girl will have an MRI on Tuesday and we will learn the results the following Monday. I’m hoping that this is just a “better safe than sorry” MRI, but the “strength” of the girl’s legs is changing (as of this week). I’m glad we can get this checked next week, but we’re all still a bit grumpy about more doctor visits!
We have been enjoying a terrific fall break. The gir’s Nonnie came and we have had so many adventures. We went to the city this weekend and enjoyed seeing the new Lurie Children’s Memorial Hospital. Any place with Whales hanging from the ceiling and anemones in the lobby is pretty awesome!
When we go to the hospital and there isn’t a doctor involved, it’s a good day! The new hospital is across from a very cool fire station and a very fun park!
After visiting a friend in the hospital (who is doing great, we are happy to report), we went to see a very fun concert! Elizabeth Mitchell is one of the girl’s favorite singers! She was so excited to meet “Miss Elizabeth” and her daughter Storey. The concert was at the Old Town School of Folk Music in a small auditorium. We snuggled in and enjoyed all of our favorites like “Little Bird”
Elizabeth Mitchell, “Little Bird”
At some point, our “very shy” girl (ha!) ran down to the stage and set up at Elizabeth Mitchell’s feet.
Before we knew it, she volunteered to lead the train while they sang “Mystery Train”. When the girl’s daddy went down to “help”, “Miss Elizabeth” announced that he was “the coolest adult at the concert!” We think so too!
(sorry for the poor picture quality…very low light, and no flash!)
After the concert, we got to meet “Miss Elizabeth”, Storey, and Penny.
Then the girl put on a concert of her own!
Fall break was a terrific “break”! I’ll update you on the girl’s medical situation tomorrow!