Monday, September 21, 2009
Chatty Kathy
We stayed home this weekend and really had a great time (even with Michigan State losing to the dreaded Fighting Irish.) We visited with friends, worked on our guest bathroom-- its much nicer now, we walked around Lake Artemesia-- a jewel of a lake just a few miles from our house-- and Madeleine had her first experience in a swing. Additionally, Madeleine "found her voice" this weekend. I came in from a long run on Saturday morning and Kirsten was sitting with her in the living room and she was just chatting away-- she's made noise for a long time but this weekend, she started adding in consonants and was very happy with herself. We have one video that gives you an idea of what Madeleine was saying all weekend long... Enjoy the video and photos:
Friday, September 18, 2009
How Far We Have Come
Hey all - It's Kirsten here and I just want to take a quick moment to reflect on how far we have come. A year ago this morning Brent and I got a call at 2:30am from a Cardiac Fellow who told us to rush as fast as we could to the hospital because things were going south, fast. I honestly don't remember much of the next hour just that we were soon standing outside our daughters hosptial room with the crash cart outside her door and no less than 15 doctors in her room. She was in hypertensive crisis and none of the quick fixes seemed to be working. After hours of hard work they finally got her stabalized and over the next few days we did continue to slide backwards but at a much slower rate. Over the following 3 months we had good days and bad days, frustrating days and days I lost it on the doctors. People often comment "We don't know how you have done it" and my response has been "it has not always been pretty".
And here we are today. Both working from home because today is Madeleine's first day of Speech Therapy. A day my mom has been talking about since she was less than 3lbs in her isolette. A year ago, I am not sure I thought we would get to today. A year ago today was my low point and the moment that keeps me up at night. Looking forward I cannot wait to experience this fall, maybe even play in some leaves with my daughter. When you live in hosptial land whole seasons can go by without you even noticing. This year I plan in taking in the colors, celebrating our successes and remembering just how far we as a family have come.....
For those of you who have picked us up off the floor and dusted us off- again I want to say thank you.
Kirsten
And here we are today. Both working from home because today is Madeleine's first day of Speech Therapy. A day my mom has been talking about since she was less than 3lbs in her isolette. A year ago, I am not sure I thought we would get to today. A year ago today was my low point and the moment that keeps me up at night. Looking forward I cannot wait to experience this fall, maybe even play in some leaves with my daughter. When you live in hosptial land whole seasons can go by without you even noticing. This year I plan in taking in the colors, celebrating our successes and remembering just how far we as a family have come.....
For those of you who have picked us up off the floor and dusted us off- again I want to say thank you.
Kirsten
Wednesday, September 16, 2009
Back in the Saddle
If I wanted to explain why I haven't blogged this summer, I could respond in the following ways:
"I took the summer off"
"I didn't want to write about medical stuff and that's what the blog's been about."
"I've been busy."
All of the statements above are likely a bit true. That being said, I don't know why I haven't been blogging this summer but I miss it and I'm going to start blogging again... perhaps slowly but I'm feeling the urge to start writing about my daughter again. Kirsten's done an admirable job keeping you up to date with pictures and updates and I'm hoping she'll continue in that regard. My focus is going to be... well, unfocused. I'm just going to write what moves me. If folks find it interesting, that's great. However, I'm going to write it regardless as I think it helps me sort out all of the craziness in my brain and I kinda like it...
Okay-- with that out of the way, I want to give a quick synopsis of the last few months as we've really had a wonderful summer. If you've talked with me this summer, you've probably heard me say something like "the real Kirsten and Brent are back" meaning that we've been busy and we've been travelling. In the past two months, we've been in the following cities:
- Outer Banks, North Carolina for a week-long vacation
- New Orleans, LA-- Kirsten and I took our first weekend vacation sans Madeleine
- Baltimore-- we visited with Kirsten's parents on their boat.
- Flint-- we visited with family back in Michigan.
- Talcott, West Virginia-- Spent a weekend at our cabin
- State College-- Attended a PSU football game and hung out with Kirsten's parents.
You could say that our motto has been "have healthy child and will travel." Of course, some of this travel has been condensed in the summer as we've been advised to slow things down this fall/winter. The flu season is scaring the heck out of us-- as well as our doctors-- and we're going to do our best to avoid getting Madeleine sick this year. It's important that she stay as healthy as possible as she's growing like crazy right now and her lungs can make major strides if she can just avoid getting sick.
In addition to our travels, I've been pretty busy as I'm training for a marathon in November and am teaching a class at Kirsten's school. The class ends tomorrow night but the past five weeks, I've taught an introductory course in English and Math to prospective college students. I've really enjoyed the class as it is composed of students who did not do well in high school but want to get into college and they must pass my class to be admitted. The class requires equal parts of tough love and dedication to getting kids over the hump and I feel like its a perfect match for my skill set. Of course, while I've been off on my long runs and/or teaching and lesson planning, Kirsten's been pulling the heavy load in our house and Madeleine's tremendous strides this year are a direct reflection of her steady focus and determination to ensure Madeleine's success.
I'm sure I'll write more in the coming days and weeks contrasting the joy we've felt this summer with the diffficulties that we struggled through last year but this post is simply about feeling good. In that vein, here's the update that we just sent to our state coordinator who asked for an update on Madeleine:
Madeleine is doing really great. We finally settled on October 9th for the surgery date as this is the first date that our surgeon and cardiologist were both free—they demanded that they both be available. We’re changing her bag at least once/day as Madeleine is extremely active. Needless to say, we can’t wait for the surgery.
In terms of general medical issues, we have an appointment with our pediatrician later this month (I forget the specific date) for a regular check-up. At the check-up, we’re expecting to get the RSV shots (I forget the specific name) as well as the flu shot. We’re definitely a bit freaked out by the H1N1 virus and we’re hoping to avoid that at all costs. Our pediatrician has us at the top of her list for the shots and we’ll be coordinating with her office once it arrives.
In terms of physical development, we’re working closely with PG County’s Infants and Toddlers on her OT and PT goals. She’s slowly getting closer to crawling and we’re also beginning to work toward walking. We (meaning Kirsten) found a research study online where parents use a treadmill to encourage walking and the results of the study showed that kids with Down Syndrome can walk much sooner if encouraged to walk on a treadmill for a few minutes/day. I know it sounds crazy but it’s a research study from the University of Michigan and pretty much everywhere we looked, folks are praising it. In any case, we watched a number of videos online (YouTube is great) and we tested the idea out this past weekend at Kirsten’s parent’s house. Madeleine really seemed to like it, so we’re currently scouring Craigslist to purchase a treadmill. In terms of fine motor skills, we’re working with Madeleine to pick up toys and then set them down—she has the picking up down pretty well but she’s mostly just flinging them away right now. Our therapist explained that this is a normal developmental stage and believes we’re making good progress. We just think we’re having fun.
In terms of eating, we’re making slow progress as Madeleine is eating small amounts of pureed baby food twice/day. She took a swallow study about a month ago and demonstrated that she’s able to protect her airway when swallowing. Still, she’s not really coordinated with her swallow and its going to take a long time before she’s eating anything that constitutes a large amount of calories… In the meantime, we continue to condense her feeds and we hope we’re close to start bolus feeding via the g-tube. We have a follow-up appointment with the GI clinic at the end of the month where we’ll establish her future feeding schedule. Over the past month, we’ve increased her calories quite a bit as she wasn’t putting on a great deal of weight. Note—I’ve used the past tense as over the past month, Madeleine’s new nickname is “Large Marge.” We don’t have a scale at home but we’re confident she’s gained plenty of weight this past month—holding her is getting to be a chore—and we’re elated with the growth.
In terms of speech/language development, PG County, through Infants and Toddlers, is sending a speech therapist next week to assess Madeleine and we’ll establish some new goals with them. We’ve also decided to pursue additional speech therapy through the Columbia Speech and Language Center—they focus specifically on issues related to Down Syndrome. We’re going to work one-on-one with a graduate student once/week and we think this should really help her development. Our first appointment is this Friday, September 18. We’re also starting to use sign language and we think that by combining sign with the other speech therapy, we’ll help Madeleine to start communicating her wants/desires. (that’s the goal at least.)
Nursing is going well. We’ve condensed our nurses down to two primary nurses during the week—one during the day and one at night. We prefer this as it ensures consistent care and also limits the number of germ infested people coming into our house. Fatima and Deborah have quickly assimilated into our family and its been great but also challenging. Its hard to be away from Madeleine during the week knowing that we only get about 60-90 minutes/day to work with her (she falls asleep around 7:30 every night). The nurses have been pretty good but no one can do all of the work that we’re capable of doing with Madeleine. Our day nurse attends all of the therapy meetings with us and we’re doing our best to express our goals for the nurses so that they can help aid in Madeleine’s development.
I think that covers the majority of our work right now. We’re pretty happy right now as we feel like we’ve come a long ways and despite the challenges ahead, we’re encouraged by Madeleine’s steady progress. We don’t have appointments set up with any specialists other than GI as they’re all waiting to see how she recovers from surgery. Rest assured, we’ll have a host of appointments—with pulmonary, cardiology, ENT, GI & genealogy—set-up when we’re discharged from the hospital. If all continues to trend in the same direction, the goal is to start talking about removing the trach in late Spring/Summer next year. We have a long time before those discussions get serious.
That's all for now. I hope everything is well with you and your family.
"I took the summer off"
"I didn't want to write about medical stuff and that's what the blog's been about."
"I've been busy."
All of the statements above are likely a bit true. That being said, I don't know why I haven't been blogging this summer but I miss it and I'm going to start blogging again... perhaps slowly but I'm feeling the urge to start writing about my daughter again. Kirsten's done an admirable job keeping you up to date with pictures and updates and I'm hoping she'll continue in that regard. My focus is going to be... well, unfocused. I'm just going to write what moves me. If folks find it interesting, that's great. However, I'm going to write it regardless as I think it helps me sort out all of the craziness in my brain and I kinda like it...
Okay-- with that out of the way, I want to give a quick synopsis of the last few months as we've really had a wonderful summer. If you've talked with me this summer, you've probably heard me say something like "the real Kirsten and Brent are back" meaning that we've been busy and we've been travelling. In the past two months, we've been in the following cities:
- Outer Banks, North Carolina for a week-long vacation
- New Orleans, LA-- Kirsten and I took our first weekend vacation sans Madeleine
- Baltimore-- we visited with Kirsten's parents on their boat.
- Flint-- we visited with family back in Michigan.
- Talcott, West Virginia-- Spent a weekend at our cabin
- State College-- Attended a PSU football game and hung out with Kirsten's parents.
You could say that our motto has been "have healthy child and will travel." Of course, some of this travel has been condensed in the summer as we've been advised to slow things down this fall/winter. The flu season is scaring the heck out of us-- as well as our doctors-- and we're going to do our best to avoid getting Madeleine sick this year. It's important that she stay as healthy as possible as she's growing like crazy right now and her lungs can make major strides if she can just avoid getting sick.
In addition to our travels, I've been pretty busy as I'm training for a marathon in November and am teaching a class at Kirsten's school. The class ends tomorrow night but the past five weeks, I've taught an introductory course in English and Math to prospective college students. I've really enjoyed the class as it is composed of students who did not do well in high school but want to get into college and they must pass my class to be admitted. The class requires equal parts of tough love and dedication to getting kids over the hump and I feel like its a perfect match for my skill set. Of course, while I've been off on my long runs and/or teaching and lesson planning, Kirsten's been pulling the heavy load in our house and Madeleine's tremendous strides this year are a direct reflection of her steady focus and determination to ensure Madeleine's success.
I'm sure I'll write more in the coming days and weeks contrasting the joy we've felt this summer with the diffficulties that we struggled through last year but this post is simply about feeling good. In that vein, here's the update that we just sent to our state coordinator who asked for an update on Madeleine:
Madeleine is doing really great. We finally settled on October 9th for the surgery date as this is the first date that our surgeon and cardiologist were both free—they demanded that they both be available. We’re changing her bag at least once/day as Madeleine is extremely active. Needless to say, we can’t wait for the surgery.
In terms of general medical issues, we have an appointment with our pediatrician later this month (I forget the specific date) for a regular check-up. At the check-up, we’re expecting to get the RSV shots (I forget the specific name) as well as the flu shot. We’re definitely a bit freaked out by the H1N1 virus and we’re hoping to avoid that at all costs. Our pediatrician has us at the top of her list for the shots and we’ll be coordinating with her office once it arrives.
In terms of physical development, we’re working closely with PG County’s Infants and Toddlers on her OT and PT goals. She’s slowly getting closer to crawling and we’re also beginning to work toward walking. We (meaning Kirsten) found a research study online where parents use a treadmill to encourage walking and the results of the study showed that kids with Down Syndrome can walk much sooner if encouraged to walk on a treadmill for a few minutes/day. I know it sounds crazy but it’s a research study from the University of Michigan and pretty much everywhere we looked, folks are praising it. In any case, we watched a number of videos online (YouTube is great) and we tested the idea out this past weekend at Kirsten’s parent’s house. Madeleine really seemed to like it, so we’re currently scouring Craigslist to purchase a treadmill. In terms of fine motor skills, we’re working with Madeleine to pick up toys and then set them down—she has the picking up down pretty well but she’s mostly just flinging them away right now. Our therapist explained that this is a normal developmental stage and believes we’re making good progress. We just think we’re having fun.
In terms of eating, we’re making slow progress as Madeleine is eating small amounts of pureed baby food twice/day. She took a swallow study about a month ago and demonstrated that she’s able to protect her airway when swallowing. Still, she’s not really coordinated with her swallow and its going to take a long time before she’s eating anything that constitutes a large amount of calories… In the meantime, we continue to condense her feeds and we hope we’re close to start bolus feeding via the g-tube. We have a follow-up appointment with the GI clinic at the end of the month where we’ll establish her future feeding schedule. Over the past month, we’ve increased her calories quite a bit as she wasn’t putting on a great deal of weight. Note—I’ve used the past tense as over the past month, Madeleine’s new nickname is “Large Marge.” We don’t have a scale at home but we’re confident she’s gained plenty of weight this past month—holding her is getting to be a chore—and we’re elated with the growth.
In terms of speech/language development, PG County, through Infants and Toddlers, is sending a speech therapist next week to assess Madeleine and we’ll establish some new goals with them. We’ve also decided to pursue additional speech therapy through the Columbia Speech and Language Center—they focus specifically on issues related to Down Syndrome. We’re going to work one-on-one with a graduate student once/week and we think this should really help her development. Our first appointment is this Friday, September 18. We’re also starting to use sign language and we think that by combining sign with the other speech therapy, we’ll help Madeleine to start communicating her wants/desires. (that’s the goal at least.)
Nursing is going well. We’ve condensed our nurses down to two primary nurses during the week—one during the day and one at night. We prefer this as it ensures consistent care and also limits the number of germ infested people coming into our house. Fatima and Deborah have quickly assimilated into our family and its been great but also challenging. Its hard to be away from Madeleine during the week knowing that we only get about 60-90 minutes/day to work with her (she falls asleep around 7:30 every night). The nurses have been pretty good but no one can do all of the work that we’re capable of doing with Madeleine. Our day nurse attends all of the therapy meetings with us and we’re doing our best to express our goals for the nurses so that they can help aid in Madeleine’s development.
I think that covers the majority of our work right now. We’re pretty happy right now as we feel like we’ve come a long ways and despite the challenges ahead, we’re encouraged by Madeleine’s steady progress. We don’t have appointments set up with any specialists other than GI as they’re all waiting to see how she recovers from surgery. Rest assured, we’ll have a host of appointments—with pulmonary, cardiology, ENT, GI & genealogy—set-up when we’re discharged from the hospital. If all continues to trend in the same direction, the goal is to start talking about removing the trach in late Spring/Summer next year. We have a long time before those discussions get serious.
That's all for now. I hope everything is well with you and your family.
Friday, September 11, 2009
A few pictures... Not many words....
Things are great here...... Frances Hittle was born on Tuesday after her mommy was a champ through nearly 24 hours of labor. A very different experience than mine to say the least. Mommy, Daddy and Frances are home. She is adorable, has more hair than Madeleine and we can't say enough how happy we are that all are healthy!
I brought some pink clothes as well as food over to their house last evening and Madeleine came along. I stood up to help Becky with Frances and when I turned around to pay attention to Madeleine again, she was crying so hard huge tears were flowing down her face. It seems that mommy helping out another baby was not appreciated by Miss Maddie... A bit of jealousy can you say???
Anyways, it's been a wild WILD week here and doesn't show signs of slowing down- I thought I would take a minute and post some cute pix from last weekend in WVA.
Anyways, it's been a wild WILD week here and doesn't show signs of slowing down- I thought I would take a minute and post some cute pix from last weekend in WVA.
Take care --- and oh yeah - We are.... Penn State!!!!
Friday, September 4, 2009
We have a date!
Put it on your calendars folks --- October 9th.
The stars (and Doctors) have aligned and this is our chosen date. All of the doctors will be in town and Madeleine will have received her Flu Shot and RSV booster for the month of October. The goal of the surgery is to reconnect her bowels and do an 'ostomy take down'. Essentially the colostomy bag will be gone and she will go to the bathroom just like every other kid. As long time readers may recall, we decided against this surgery in June 2008 and opted to take her home and let her grow before attempting another surgery. And then last fall happened..... Needless to say, ostomy reversal became very low priority after the events of last fall. The doctors anticipate this not being anything out of the ordinary and they have given us a ballpark of her being admitted for a week. This will be longer than her last surgery as anytime you mess around with the bowels they 'go to sleep' and you have to wait for them to 'wake up' before you can start advancing feeds. This can be a very long process, and for the really long time readers you may remember this being a problem when she first went to Children's to have her NEC surgery. We kept asking " what happens if her bowels don't wake up?" and they kept telling us that they would. Soooo, in essence it will be a waiting game. In the mean time mama bear will be sitting guard making sure that everyone washes their hands when they come into our room so that we don't catch any bugs while we are there.
As I posted last time, this has recently become more of an issue because Madeleine is all over the place and rolling on the floor is not conducive to keeping a bag on. Not nearly as dangerous as any of the issues we have addressed in the past, but I promise you - just as frustrating.
Madeleine is getting closer to crawling every day. We had a bit of a setback on feeding right after our swallow study and we attribute this to her dislike of barium. Who can blame her? However after a few days of giving her a break, I am happy to report she will once again open her mouth when I put a spoon near it. Brent commented that this seemed to really be frustrating me - and I'll be honest, it did. We both come from a long line of eaters and it is a core function to live. PLUS she did it before. It's the first time in a long time that once we hit a goal we had to step back and start over. Further, it was usually the first task I executed after walking in the door from a long day of work and 3 trains to get home. I JUST WANTED HER TO OPEN HER MOUTH... Alas, it's over with and we are back on track.
Until surgery we have a busy few weeks ahead of us. We hope to meet the newest member of the Hittle family ANY DAY NOW, we hope to catch a PSU football game and see Joel & Kathy from FL and both sets of parents.
Take care folks, if you are traveling this holiday weekend - be safe.
Madeleine, Kirsten & Brent
The stars (and Doctors) have aligned and this is our chosen date. All of the doctors will be in town and Madeleine will have received her Flu Shot and RSV booster for the month of October. The goal of the surgery is to reconnect her bowels and do an 'ostomy take down'. Essentially the colostomy bag will be gone and she will go to the bathroom just like every other kid. As long time readers may recall, we decided against this surgery in June 2008 and opted to take her home and let her grow before attempting another surgery. And then last fall happened..... Needless to say, ostomy reversal became very low priority after the events of last fall. The doctors anticipate this not being anything out of the ordinary and they have given us a ballpark of her being admitted for a week. This will be longer than her last surgery as anytime you mess around with the bowels they 'go to sleep' and you have to wait for them to 'wake up' before you can start advancing feeds. This can be a very long process, and for the really long time readers you may remember this being a problem when she first went to Children's to have her NEC surgery. We kept asking " what happens if her bowels don't wake up?" and they kept telling us that they would. Soooo, in essence it will be a waiting game. In the mean time mama bear will be sitting guard making sure that everyone washes their hands when they come into our room so that we don't catch any bugs while we are there.
As I posted last time, this has recently become more of an issue because Madeleine is all over the place and rolling on the floor is not conducive to keeping a bag on. Not nearly as dangerous as any of the issues we have addressed in the past, but I promise you - just as frustrating.
Madeleine is getting closer to crawling every day. We had a bit of a setback on feeding right after our swallow study and we attribute this to her dislike of barium. Who can blame her? However after a few days of giving her a break, I am happy to report she will once again open her mouth when I put a spoon near it. Brent commented that this seemed to really be frustrating me - and I'll be honest, it did. We both come from a long line of eaters and it is a core function to live. PLUS she did it before. It's the first time in a long time that once we hit a goal we had to step back and start over. Further, it was usually the first task I executed after walking in the door from a long day of work and 3 trains to get home. I JUST WANTED HER TO OPEN HER MOUTH... Alas, it's over with and we are back on track.
Until surgery we have a busy few weeks ahead of us. We hope to meet the newest member of the Hittle family ANY DAY NOW, we hope to catch a PSU football game and see Joel & Kathy from FL and both sets of parents.
Take care folks, if you are traveling this holiday weekend - be safe.
Madeleine, Kirsten & Brent
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