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Thursday, April 7, 2011
Tuesday, March 1, 2011
Ch-ch-ch-ch-changes.....
I started this blog three long years ago to chronicle the, what I thought would be, relatively simple adoption of our second child from Kyrgyzstan. It has, as you know, turned out to be a very long, very difficult process. It has also brought us some unexpected and very welcome surprises. Our lives have taken miraculous twists and turns and we have not only survived, but, in my opinion, thrived! Our little family works. We are changed people, Kevin and I, that is for sure. There are things that three years ago would've been at the forefront of my mind that never even cross it anymore. Our hopes and dreams as well as our goals continue to evolve. That said, it's time to start fresh. I will be leaving this blog (don't worry, I'm exporting it so it'll not be lost) for another. My hope is that it will be a place to share our daily happenings, to keep loved ones updated, to advocate and educate, share our joys and our sorrows, and as always continue with the therapy that blogging provides me. I sure hope you'll join us, add us to your dashboard, Google Reader, follow us, or whatever it is you do. Oh, and as a little incentive, I promise there's something really exciting coming up - but you'll have to come on over to find out about it!!
See you there!!!!
Hospital admission number.........oh, who am I kidding?
As if I could actually count how many times she's been admitted - right!
So, we're here again. It all started with a "simple" cold last week. Colds, as I've said a million times before, are not so simple for M. There is a reason I am the Clorox Queen, Germ-a-phobe, Purell Nazi - whatever term of endearment you wish to bestow upon me. Illnesses, no matter how insignificant or minor they may seem to the average individual wreck havoc on M's system. You see, getting sick isn't "good for her" contrary the the advise of so many well-meaning (non-doctor) types that like to give me advice. I took her to see her pedi on Saturday who promptly started her on an antibiotic to hopefully ward off the secondary bacterial pneumonia that always seems to join her following a cold. I should mention that this is her first illness of the very long Wisconsin winter, so we HAVE done quite well. Unfortunately, she had already started into this very unpleasant gag-vomit cycle which continued through the weekend. That quickly lead to increased issues with her already compromised bowels which may have lead to issues with her distal shunt catheter which may have lead to a complete, multiple shunt malfunction. Further testing today will hopefully tell the whole story. All we know for now is that she is miserable, her brain MRI looks awful, her abdomen is distended, her xray looks crappy (pardon the pun) and we could be looking at surgery.
Stay tuned.............................................................
So, we're here again. It all started with a "simple" cold last week. Colds, as I've said a million times before, are not so simple for M. There is a reason I am the Clorox Queen, Germ-a-phobe, Purell Nazi - whatever term of endearment you wish to bestow upon me. Illnesses, no matter how insignificant or minor they may seem to the average individual wreck havoc on M's system. You see, getting sick isn't "good for her" contrary the the advise of so many well-meaning (non-doctor) types that like to give me advice. I took her to see her pedi on Saturday who promptly started her on an antibiotic to hopefully ward off the secondary bacterial pneumonia that always seems to join her following a cold. I should mention that this is her first illness of the very long Wisconsin winter, so we HAVE done quite well. Unfortunately, she had already started into this very unpleasant gag-vomit cycle which continued through the weekend. That quickly lead to increased issues with her already compromised bowels which may have lead to issues with her distal shunt catheter which may have lead to a complete, multiple shunt malfunction. Further testing today will hopefully tell the whole story. All we know for now is that she is miserable, her brain MRI looks awful, her abdomen is distended, her xray looks crappy (pardon the pun) and we could be looking at surgery.
Stay tuned.............................................................
Friday, February 25, 2011
Doctors
It's been a very doctory week around here. Monday, M had her 4 hour EEG to see how things are looking after the Sabril wean. Wednesday, she had her swallow study to try and get some answers about her previous aspirations and constant gagging. Thursday, E had his sniff...sniff...FIVE year old well child check up. How in the world did he get so old???? We had to bump it up from May because we needed "well child" letters for our updated homestudy.
EEG went well. We had a really good tech who was super fast at getting her all hooked up. He asked if I was okay with thecrying screaming and if I wanted him to just "get it done" and I appreciated that. In my experience, the more you try and fluff kids through stuff, often the more anxious and upset they get. M HATES having her head touched (geez, I wonder why) so EEG time is her least favorite time. She was completely wired, wrapped and calmed down in under 20 minutes - a record, for sure! We hung out for four hours, she ate, napped like she was supposed to, played, had some seizures, and then we unhooked and went home. Unfortunately, the results were not favorable. She is again showing an electrodecromental response (classic Infantile Spasms) which means we have to put her back on the Sabril. She is also showing more general disorganization bilaterally and focal activity primarily in the right posterior. She is having multiple sub clinical seizures when awake and even when asleep. We increased her Trileptal, will restart the Sabril and wait a few weeks before we discuss again weaning the Keppra. I'm sad....she was doing so well developmentally off the Sabril that I hate to put her back on it, but we can't let the IS continue to damage her already damaged brain.
The swallow study went fairly well and was definitely informative. They were running behind, which for a girl who was starving was not cool. As it turns out, M has a 5/30 projection fraction. Basically for approximately every 30 times she swallows, 5 times the food or liquid slips under her epiglottis and into her trachea. Each time it occurred during the study, she was able to recover without aspirating, however, this does place her at higher risk for future aspirations. It also seems that it takes her on average three swallows to empty her mouth and throat instead of just one. We will be exploring thickening her liquids and medications and will be feeding her slower and in very small bites. It is possible that during her last shunt surgery in January (since after that is when this all began) some nerve damage occurred to her vocal chords or throat. We'll be talking to her ENT about this at her upcoming appointment in a couple of weeks. It's also possible that her reflux medication dosage needs to be increased since it hasn't been adjusted in over a year.
E's pediatrician appointment was extremely informative and he did such an incredible job! For a sensory kiddo, visits to the doctor are always incredibly challenging. He did awesome - he wore the gown, let her look in his ears, eyes, do his blood pressure and his exam with very little fight. He got 4 shots and was quite forgiving. The nurse brought him a sucker and he said "I don't really like candy, do you have anything else for me?" Overall, the doc was extremely impressed with his language skills, his intellectual ability, etc., but not so much with his growth. I was expecting that. He's gained two pounds in the last two years. In fact, he's been hovering between 29-32 pounds for OVER two years! He is at 41% for height and 3% for weight. She is now concerned so he had some blood drawn to begin exploring the possibility of other underlying conditions. He eats a good amount of food and excellent quality - whole milk, full fat yogurt every day, fruits and veggies, pasta. That said, he never stops moving, either. He is in constant motion! She immediately noticed his "special" twitches and "ticks" as well as his sensory issues and discussed patching him in to the developmental clinic and following up with neuropsych. Off the doctor subject, but on the developmental subject, we have finally won the battle with school over getting him therapy services. His IEP is being written and he'll be receiving SLP and OT beginning soon!
So, it's been a busy week, but feels good to have answers and plans.
EEG went well. We had a really good tech who was super fast at getting her all hooked up. He asked if I was okay with the
The swallow study went fairly well and was definitely informative. They were running behind, which for a girl who was starving was not cool. As it turns out, M has a 5/30 projection fraction. Basically for approximately every 30 times she swallows, 5 times the food or liquid slips under her epiglottis and into her trachea. Each time it occurred during the study, she was able to recover without aspirating, however, this does place her at higher risk for future aspirations. It also seems that it takes her on average three swallows to empty her mouth and throat instead of just one. We will be exploring thickening her liquids and medications and will be feeding her slower and in very small bites. It is possible that during her last shunt surgery in January (since after that is when this all began) some nerve damage occurred to her vocal chords or throat. We'll be talking to her ENT about this at her upcoming appointment in a couple of weeks. It's also possible that her reflux medication dosage needs to be increased since it hasn't been adjusted in over a year.
E's pediatrician appointment was extremely informative and he did such an incredible job! For a sensory kiddo, visits to the doctor are always incredibly challenging. He did awesome - he wore the gown, let her look in his ears, eyes, do his blood pressure and his exam with very little fight. He got 4 shots and was quite forgiving. The nurse brought him a sucker and he said "I don't really like candy, do you have anything else for me?" Overall, the doc was extremely impressed with his language skills, his intellectual ability, etc., but not so much with his growth. I was expecting that. He's gained two pounds in the last two years. In fact, he's been hovering between 29-32 pounds for OVER two years! He is at 41% for height and 3% for weight. She is now concerned so he had some blood drawn to begin exploring the possibility of other underlying conditions. He eats a good amount of food and excellent quality - whole milk, full fat yogurt every day, fruits and veggies, pasta. That said, he never stops moving, either. He is in constant motion! She immediately noticed his "special" twitches and "ticks" as well as his sensory issues and discussed patching him in to the developmental clinic and following up with neuropsych. Off the doctor subject, but on the developmental subject, we have finally won the battle with school over getting him therapy services. His IEP is being written and he'll be receiving SLP and OT beginning soon!
So, it's been a busy week, but feels good to have answers and plans.
Monday, February 14, 2011
Tuesday, February 1, 2011
Future Hollywood Makeup Artist??
I wish I could say that opening my email to find new pictures of K brings me only joy, but it also brings sadness, anger and guilt. In any case, I am still grateful for them. I am grateful that she is growing and finding some moments of happiness in her life. I am especially grateful that she, like her brother, loves to draw on her own face!!
Thursday, January 27, 2011
A happy surgeon
Finally - I get to see a smile on that sweet face of his! I know I have gushed on before about how much I love our neurosurgeon. I was saying to Kevin last night that I sure hoped M was in one of her silly moods when we got to her follow-up appointment today. Her doc has, unfortunately, always seen her at "her worst" and while he is always professional and optimistic, I really wanted him to see what we get to see every day - that is a happy, smiling, sweet baby girl. He was pleased and I think a little relieved, too, that things have settled down for her. Better yet, we got a pass until May when she'll return for her next MRI. She does still have some enlarged lymph nodes, one under her neck incision and one at the base of her skull, that we'll monitor for changes. Hopefully nothing is brewing.
Thursday, January 20, 2011
Aspirations
And no, I'm not referring to my dreams for the future.
Last night we found ourselves in the ER. M aspirated during her evening medications and bottle feeding. This is her second aspiration in less than a month - suspicious. It was a particularly frightening incident, she went nearly a minute without being able to cry, move air, cough or do anything but lay stiff, looking totally panicked. She then began the coughing, vomiting, crying cycle. She improved over the next 1/2 hour, but the after hours nurse talked to the peds on-call doc who wanted her to be seen in ER due to "her complex medical picture." I can appreciate that so we made the 1 hour trip to the hospital.
I'm always amazed by our great facility. It is a University hospital - a teaching facility with a contant influx of new faces - med students and residents rotating through. Still, no matter when we go or where we go we are always greeted like we're old friends. Mind you, we've only been through this ER three times - that's it! Most of our admissions have been through the clinic. Still, last night there were nurses who remembered us, a Child Life specialist who helped us out last time when E was along, and the very same Pediatric ER doc that was on the last 2 times we were there. You wouldn't expect such a down home community feeling at a facility like this one, but we always get it.
Anyway, we were in and out in under 2 hours - a record, I think. M looks good, no obvious problems. We most likely need to follow up with a swallow study, however. I'm hoping this is just an intermittent issue related to her three recent surgeries and not something more.
Last night we found ourselves in the ER. M aspirated during her evening medications and bottle feeding. This is her second aspiration in less than a month - suspicious. It was a particularly frightening incident, she went nearly a minute without being able to cry, move air, cough or do anything but lay stiff, looking totally panicked. She then began the coughing, vomiting, crying cycle. She improved over the next 1/2 hour, but the after hours nurse talked to the peds on-call doc who wanted her to be seen in ER due to "her complex medical picture." I can appreciate that so we made the 1 hour trip to the hospital.
I'm always amazed by our great facility. It is a University hospital - a teaching facility with a contant influx of new faces - med students and residents rotating through. Still, no matter when we go or where we go we are always greeted like we're old friends. Mind you, we've only been through this ER three times - that's it! Most of our admissions have been through the clinic. Still, last night there were nurses who remembered us, a Child Life specialist who helped us out last time when E was along, and the very same Pediatric ER doc that was on the last 2 times we were there. You wouldn't expect such a down home community feeling at a facility like this one, but we always get it.
Anyway, we were in and out in under 2 hours - a record, I think. M looks good, no obvious problems. We most likely need to follow up with a swallow study, however. I'm hoping this is just an intermittent issue related to her three recent surgeries and not something more.
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