It's that time of year again! In a little more than two weeks, Team Holland and Eden will once again be hitting the street to March for Babies.
I watched this video for the first time in a long time and was surprised at the emotion I felt looking at pictures of the girls in the NICU. Holland and Eden will turn 7 this summer, and in some ways I feel so far removed from that time in our lives. But, when I take the time to pause and reflect, I am instantly transported back there and I feel...lucky and strong. I cannot believe that we survived such an ordeal, and that we are now fairly emotionally intact and happy.
We have committed to doing the walk again this year as a celebration of our beautiful girls, with the continued hope that our donations will be put to good use, and someday fewer babies will be born too soon.
Please support Team Holland and Eden as we walk in our 6th March for Babies, and help us reach our goal!
Thursday, April 14, 2011
Friday, April 01, 2011
Is It Spring Yet?
I am sure that people get tired of reading about my sick kids, probably just as much as I get sick of writing about it, but here we are again.
Eden has been sick all week with a fever, sore throat, and severe congestion. It appears to be viral, seeing as how the strep test was negative and the antibiotics don't seem to be helping. She missed the whole week of school, and today is the first day that is finally feeling a little better. Just as she seems to be on the upswing, Holland caught it. She complained of a headache and sore throat yesterday morning, but didn't have a fever and was playing cheerfully, so I sent her to school. Bad call. They called me an hour later to pick her up. By the time I got her home her fever was up to 102.3 and she was miserable. So, it appears that we are looking at another 3-4 days of misery, assuming she has the same illness as Eden.
Have I mentioned that we are ready for Spring and a break in all this sickness we have had this winter??? I think that we have had a really bad cold/flu season this year, just based on the sheer number of serious illnesses we have had. However, my girls are growing up and getting stronger, and at least these yucky viruses don't put us in the hospital anymore. I am thankful that we aren't spending the whole winter inpatient!
There have been a few breaks between sicknesses, and some major developments that bear mentioning...
I became a brunette! Chances are that I will probably go back to blonde in the summer, but it's fun for a change of pace.
We went to a Pinkalicious cupcake social and saw Pinkalicious The Musical. We bought the soundtrack and it is a MAJOR hit at our house. I had those songs stuck in my head for weeks.
We did EuroPeds (see previous post).
Eden got a new manual wheelchair, a Zippie Zone...in pink of course. It took 6 months to complete the process, but it was fully covered between our private insurance and CSHC. We haven't had a whole lot of time to practice using it yet, but she is already pretty good at pushing and steering it. Our long-term goal is that she will continue to use her power chair when we are outdoors or for longer distances, but will use the manual chair in smaller settings (like at school). So far, we are happy with it. Eden sits well in it and it is pretty easy for her to maneuver. It puts her a eye-level with her peers, and while slightly tall for her now, will eventually be good for her learning to transfer (particularly to the potty) independently. I will post a more thorough review in the future when we have had more of a chance to use it.
Holland got a new bike and we have had a couple of nice days to ride it!
Both girls got new glasses! Eden picked out a pair of pink and purple Flexon frames, which we hope will be good because they are flexible and will not need as many adjustments as her old pair. They look beautiful on her, but the jury is still out on whether they will hold up for her. We shall see. Holland picked out a pair of chunky blue frames, that are very stylish and certainly make a bold statement...very her. I was honestly a little hesitant about them because I worried they were too heavy for her delicate features and would hide her face too much, but I decided to let her choose. She has always had definitely opinions on what she likes, mindless of what other people might think, and I really admire her for that. Now that I have had a week to get used to them, I really like them. I think they suit her and she gets a lot of compliments:-) Of course, they are both just so cute anyway...if I do say so myself.
Eden has been sick all week with a fever, sore throat, and severe congestion. It appears to be viral, seeing as how the strep test was negative and the antibiotics don't seem to be helping. She missed the whole week of school, and today is the first day that is finally feeling a little better. Just as she seems to be on the upswing, Holland caught it. She complained of a headache and sore throat yesterday morning, but didn't have a fever and was playing cheerfully, so I sent her to school. Bad call. They called me an hour later to pick her up. By the time I got her home her fever was up to 102.3 and she was miserable. So, it appears that we are looking at another 3-4 days of misery, assuming she has the same illness as Eden.
Have I mentioned that we are ready for Spring and a break in all this sickness we have had this winter??? I think that we have had a really bad cold/flu season this year, just based on the sheer number of serious illnesses we have had. However, my girls are growing up and getting stronger, and at least these yucky viruses don't put us in the hospital anymore. I am thankful that we aren't spending the whole winter inpatient!
There have been a few breaks between sicknesses, and some major developments that bear mentioning...
I became a brunette! Chances are that I will probably go back to blonde in the summer, but it's fun for a change of pace.
We went to a Pinkalicious cupcake social and saw Pinkalicious The Musical. We bought the soundtrack and it is a MAJOR hit at our house. I had those songs stuck in my head for weeks.
We did EuroPeds (see previous post).
Eden got a new manual wheelchair, a Zippie Zone...in pink of course. It took 6 months to complete the process, but it was fully covered between our private insurance and CSHC. We haven't had a whole lot of time to practice using it yet, but she is already pretty good at pushing and steering it. Our long-term goal is that she will continue to use her power chair when we are outdoors or for longer distances, but will use the manual chair in smaller settings (like at school). So far, we are happy with it. Eden sits well in it and it is pretty easy for her to maneuver. It puts her a eye-level with her peers, and while slightly tall for her now, will eventually be good for her learning to transfer (particularly to the potty) independently. I will post a more thorough review in the future when we have had more of a chance to use it.
Holland got a new bike and we have had a couple of nice days to ride it!
Both girls got new glasses! Eden picked out a pair of pink and purple Flexon frames, which we hope will be good because they are flexible and will not need as many adjustments as her old pair. They look beautiful on her, but the jury is still out on whether they will hold up for her. We shall see. Holland picked out a pair of chunky blue frames, that are very stylish and certainly make a bold statement...very her. I was honestly a little hesitant about them because I worried they were too heavy for her delicate features and would hide her face too much, but I decided to let her choose. She has always had definitely opinions on what she likes, mindless of what other people might think, and I really admire her for that. Now that I have had a week to get used to them, I really like them. I think they suit her and she gets a lot of compliments:-) Of course, they are both just so cute anyway...if I do say so myself.
Thursday, March 31, 2011
Eden at EuroPeds!
Eden did two weeks of intensive physical therapy at EuroPeds in Pontiac, MI, at the end of February. The timing worked out nicely because we all had the last week of Feb off for winter break, so she only ended up missing 4 days of school. We were supposed to go 5 days a week, 4 hours a day for two weeks, but had to miss the very first day because of a snow storm that dumped 10 inches of snow on us.
It was a serious break from our usual routine because I had to wake Eden up at the crack of dawn to feed her and get her out the door in time for an hour drive, and we had to be there at 9am. It was a sneak peak of what life might be like next year when the girls are in school full-time and have to leave at 8am every day (YIKES!). But we did it, and I was pretty proud of myself for getting her there on time...for the most part.
Overall I was very impressed with the program and the therapist that Eden worked with. She pushed her to work really hard, while still keeping her motivated and (mostly) happy. And Eden did work hard. She was doing one legged squats with weights on her legs. It was intense. I am sure if I did half of what she did I wouldn't be able to move the next day, but she is tougher than most of us and really didn't seem sore or over-tired at all. She also ate GREAT....like I have never seen her eat before.
It seemed a lot like she was an athlete with a personal trainer for the time we were there, and she made some nice gains in her overall strength and stability. I think she enjoyed it and felt a sense of personal accomplishment when it was finished. We are already looking forward to going back, but probably not until the same time next year when insurance will cover it again. In the meantime, we will continue with our once a week private PT at home, along with therapeutic riding (we started a new program in March) once a week, and hippotherapy once a week. We are also planning to attend another 4-week conductive education camp this summer.
Should be plenty to keep us busy.
Wednesday, March 23, 2011
Thursday, February 17, 2011
Flu Bug
Holland is sick right now with our first case of Influenza. The FLU. It's one of those things, like RSV, that strikes fear in the heart of every micropreemie parent. She has had a flu shot every fall since she came home from the NICU, with 2 extra shots last year to help protect her from H1N1. Unfortunately, the shot can't protect us from every flu bug out there, so here we are.
She had a low-grade fever on Friday night, but it came right down with Motrin and didn't return on Saturday. I actually took her in to after-hours care, thinking I should make sure it wasn't another case of strep (we had that a couple of weeks ago), but it was so crowded with sickos that we ended up leaving without touching anything and without being seen. She was okay that night, and on Sunday during the day, with the exception of a really runny nose. On Sunday night the fever returned and she began to feel really, really crummy. I took her to the pediatrician on Monday morning and they diagnosed influenza. We have been managing okay during the day with Motrin, fluids, and lots of television, ipad, and video games.
Night time has been a lot more difficult. For three nights in a row she was up at least once an hour crying, moaning, and generally feeling miserable. She could not breathe through her nose, was coughing, and had all over aches and pains. She complains about a tummy ache and a yucky dry mouth and lips. A few times she actually called out, "Somebody help me!" :-( Last night, night 4, was the first that she (and I) got longer than an hour stretch of sleep at a time. She actually slept pretty good from 2am until 8am. So far today her fever has not returned and I am hopeful that we have turned a corner.
Through it all her lungs have seemed to remain remarkably clear, and at both checks at the doctor's office she was satting 99-100. Happy, happy, joy, joy. I will take 3 miserable night at home with clear lungs over ANY nights in the hospital on oxygen. So, today we remain over one year hospital-free, and it looks like we might have kicked the flu bug's butt at home. (I hope I am not speaking too soon...)
Holland will be out of school this whole week, and missed her kindergarten Valentine's Day party. Eden is amazingly still healthy. I am crossing all of my crossables that she will STAY that way and not catch this, because she is supposed to start 2 weeks of intensive physical therapy at EuroPeds on Monday. Her getting sick now will be a major setback in so many ways... We are so ready for spring!
She had a low-grade fever on Friday night, but it came right down with Motrin and didn't return on Saturday. I actually took her in to after-hours care, thinking I should make sure it wasn't another case of strep (we had that a couple of weeks ago), but it was so crowded with sickos that we ended up leaving without touching anything and without being seen. She was okay that night, and on Sunday during the day, with the exception of a really runny nose. On Sunday night the fever returned and she began to feel really, really crummy. I took her to the pediatrician on Monday morning and they diagnosed influenza. We have been managing okay during the day with Motrin, fluids, and lots of television, ipad, and video games.
Night time has been a lot more difficult. For three nights in a row she was up at least once an hour crying, moaning, and generally feeling miserable. She could not breathe through her nose, was coughing, and had all over aches and pains. She complains about a tummy ache and a yucky dry mouth and lips. A few times she actually called out, "Somebody help me!" :-( Last night, night 4, was the first that she (and I) got longer than an hour stretch of sleep at a time. She actually slept pretty good from 2am until 8am. So far today her fever has not returned and I am hopeful that we have turned a corner.
Through it all her lungs have seemed to remain remarkably clear, and at both checks at the doctor's office she was satting 99-100. Happy, happy, joy, joy. I will take 3 miserable night at home with clear lungs over ANY nights in the hospital on oxygen. So, today we remain over one year hospital-free, and it looks like we might have kicked the flu bug's butt at home. (I hope I am not speaking too soon...)
Holland will be out of school this whole week, and missed her kindergarten Valentine's Day party. Eden is amazingly still healthy. I am crossing all of my crossables that she will STAY that way and not catch this, because she is supposed to start 2 weeks of intensive physical therapy at EuroPeds on Monday. Her getting sick now will be a major setback in so many ways... We are so ready for spring!
Thursday, February 10, 2011
Thursday, January 06, 2011
The State of Affairs
Happy New Year!!
Life is a crazy whirlwind around here, as usual, and I have not been able to find a whole lot of time for blogging. We had a great holiday despite the fact that at least one person in my household has been sick since Thanksgiving. It seems that Eden and I bore the brunt of it starting with congestion and coughs...the kind of cough that once it starts you can't stop coughing, so much that you start sweating and tears start flowing and you think you might hurl, but you don't. I had that kind of cough on Christmas 
day. In the midst of that we had a bout of stomach cramping and yuck-poo that lasted for at least a week and made the rounds through each member of the household. Then, just when we thought we were back on track we had another round of fevers and congestion for the New Year. John made it through the entire holiday relatively unscathed, but is in bed today with a nasty stomachache that appears to be something entirely different. I hope this is not an indication of how our entire winter is going to go because I am feeling pretty much done with being sick!
On the bright side (this is me, ever the optimist), WE MADE IT THROUGH THE ENTIRE YEAR OF 2010 WITH NO HOSPITAL STAYS!!!!!!!!!!!! Isn't that so great, amazing, and splendid??? Also worth 
mentioning is the fact that in February Eden will be TWO YEARS hospital-free. It is clearly not that we haven't been sick. It is just that the girls are developing new, undamaged lung tissue and gaining trunk strength and control making it easier for them to cough and clear their lungs and maintain their oxygen saturation and not develop pneumonia. This makes me so happy.
2010 was a great year for us in other ways as well. These are some of our major accomplishments and experiences for the year (in no particular order):
* Eden learned to use the potty and is 100% pull-up free during the day.
* Holland learned to stay dry through the night.
* The girls started regular kindergarten in our neighborhood school.
* We moved to another city for 4 weeks so Eden could do conductive education.
* We went to an amusement park and the girls rode rides for the first time.
* We went camping.
* I fractured my rib after falling off my bike (ouch).
* We went to the beach more than once.
* Holland learned to swim independently wearing a life vest.
* Eden got a bike and learned to ride it.
* We made numerous home improvements and put our house on the market.
* Holland and Eden learned a ton. Both girls have started to read, and Eden's reading has especially skyrocketed. I bet she is at nearly a late-first grade level in both word reading and comprehension. This really makes my heart swell, because I love to read and I know how many doors a good book can open for anyone, but especially a kid who has physical limitations. You can go anywhere in a book!
All in all, 2010 was a great year for us. I was sad to see it go, and will remember it fondly.
There were, however, some major things I would have liked to see happen that didn't...mostly related to feeding and growth. We haven't made much progress at all on either front. Each girl grew 2 inches, putting H at 43 inches and E at 42. Eden gained a pound and a half, putting her at 31.5 pounds. Holland didn't gain any weight. Zero. She is still pushing 32 pounds.
I also would have liked to see Eden doing some independent standing, but maybe that was too lofty a goal. She is able to bear more weight on her legs while holding onto something, but progress is really slow in this department.
Maybe 2011 will be our year for physical growth - gain some weight and work toward Eden's independent standing. Those will be my goals for the New Year, along with selling our house and moving into a new one, and doing a couple more sessions of conductive ed (we are looking at going back in February and again for summer camp). Also, we will start looking into a bilateral cochlear implant. I think a second implant is the way to go and would really help Eden at school and in her future music career (lol), but I am so anxious about pulling the trigger in terms of another major surgery. So, I still have a lot of thought and research to put into it, but if we are going to do it I think this is the year.
That should keep us busy!
How about you? Got any plans?
Life is a crazy whirlwind around here, as usual, and I have not been able to find a whole lot of time for blogging. We had a great holiday despite the fact that at least one person in my household has been sick since Thanksgiving. It seems that Eden and I bore the brunt of it starting with congestion and coughs...the kind of cough that once it starts you can't stop coughing, so much that you start sweating and tears start flowing and you think you might hurl, but you don't. I had that kind of cough on Christmas 
day. In the midst of that we had a bout of stomach cramping and yuck-poo that lasted for at least a week and made the rounds through each member of the household. Then, just when we thought we were back on track we had another round of fevers and congestion for the New Year. John made it through the entire holiday relatively unscathed, but is in bed today with a nasty stomachache that appears to be something entirely different. I hope this is not an indication of how our entire winter is going to go because I am feeling pretty much done with being sick!
On the bright side (this is me, ever the optimist), WE MADE IT THROUGH THE ENTIRE YEAR OF 2010 WITH NO HOSPITAL STAYS!!!!!!!!!!!! Isn't that so great, amazing, and splendid??? Also worth 
mentioning is the fact that in February Eden will be TWO YEARS hospital-free. It is clearly not that we haven't been sick. It is just that the girls are developing new, undamaged lung tissue and gaining trunk strength and control making it easier for them to cough and clear their lungs and maintain their oxygen saturation and not develop pneumonia. This makes me so happy.
2010 was a great year for us in other ways as well. These are some of our major accomplishments and experiences for the year (in no particular order):
* Eden learned to use the potty and is 100% pull-up free during the day.
* Holland learned to stay dry through the night.
* The girls started regular kindergarten in our neighborhood school.
* We moved to another city for 4 weeks so Eden could do conductive education.
* We went to an amusement park and the girls rode rides for the first time.
* We went camping.
* I fractured my rib after falling off my bike (ouch).
* We went to the beach more than once.
* Holland learned to swim independently wearing a life vest.
* Eden got a bike and learned to ride it.
* We made numerous home improvements and put our house on the market.
* Holland and Eden learned a ton. Both girls have started to read, and Eden's reading has especially skyrocketed. I bet she is at nearly a late-first grade level in both word reading and comprehension. This really makes my heart swell, because I love to read and I know how many doors a good book can open for anyone, but especially a kid who has physical limitations. You can go anywhere in a book!
All in all, 2010 was a great year for us. I was sad to see it go, and will remember it fondly.There were, however, some major things I would have liked to see happen that didn't...mostly related to feeding and growth. We haven't made much progress at all on either front. Each girl grew 2 inches, putting H at 43 inches and E at 42. Eden gained a pound and a half, putting her at 31.5 pounds. Holland didn't gain any weight. Zero. She is still pushing 32 pounds.
I also would have liked to see Eden doing some independent standing, but maybe that was too lofty a goal. She is able to bear more weight on her legs while holding onto something, but progress is really slow in this department.
Maybe 2011 will be our year for physical growth - gain some weight and work toward Eden's independent standing. Those will be my goals for the New Year, along with selling our house and moving into a new one, and doing a couple more sessions of conductive ed (we are looking at going back in February and again for summer camp). Also, we will start looking into a bilateral cochlear implant. I think a second implant is the way to go and would really help Eden at school and in her future music career (lol), but I am so anxious about pulling the trigger in terms of another major surgery. So, I still have a lot of thought and research to put into it, but if we are going to do it I think this is the year.
That should keep us busy!
How about you? Got any plans?
Monday, December 20, 2010
Visit with the Big Man
Holland asked Santa for Jessie and Woody from Toy Story 3. Eden asked for the Magic Rise Oven to use in her pink cupcake making factory. I bet they will get what they wish for. They have been really good girls this year!
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