Kennedy's next appointment at Duke is June 22nd. She will have a follow-up MRI followed by an appointment with her neurosurgeon, Dr. Fuchs who will read the report that day. Nervous, but confident and wishing for the best!
Baby Kennedy
Wednesday, May 25, 2011
12 month check-up
Just a quick update to let everyone know (and to give hope to all of you other TCS parents who like I, had only read sad stories on the internet) - Kennedy had her 12 month check up this past Friday and our doctor said developmentally, it's as if nothing ever happened to Kennedy. She is right on track! AMAZING!!!
Kennedy's next appointment at Duke is June 22nd. She will have a follow-up MRI followed by an appointment with her neurosurgeon, Dr. Fuchs who will read the report that day. Nervous, but confident and wishing for the best!
Kennedy's next appointment at Duke is June 22nd. She will have a follow-up MRI followed by an appointment with her neurosurgeon, Dr. Fuchs who will read the report that day. Nervous, but confident and wishing for the best!
Wednesday, April 27, 2011
No Place Like Home
We are so happy to have our precious little girl home. We got home late Sunday afternoon and are SO much more comfortable now. We were instructed to change her bandage after 2 days, which was yesterday. After that, we are to change it every 5 days and then leave it open to the air for good. Her scar seems HUGE - 4 inches approximately and UGLY but our dear nurse mothers say it looks good, properly healing.
It's truly amazing how quickly she is recovering and I want other TCS parents to be prepared how quickly it happens and how utterly amazing it is. She is not herself 100% yet. She is more shy around strangers than she used to be, cries out in pain when she moves in certain ways, and is no longer walking independently; however, we've only been home for 3 days! It's coming fast and she'll be just fine before we know it.
As for now, home directions include dressing changes, no soaking (bath or pool) for 2 weeks, no shower for first 2 days, no lifting more than 5 lbs (hahahaha) and no strenuous activity. She is loving her Nana & Papa (saying both now) and the ice cream and tickles that come with them.
Thank you for all of the well wishes and prayers. We have our first follow-up appt at Duke with Dr. Fuchs next Tues (May 3rd). We'll keep you updated! Sorry for the delay, I've been busy catching up on baby snuggles!
It's truly amazing how quickly she is recovering and I want other TCS parents to be prepared how quickly it happens and how utterly amazing it is. She is not herself 100% yet. She is more shy around strangers than she used to be, cries out in pain when she moves in certain ways, and is no longer walking independently; however, we've only been home for 3 days! It's coming fast and she'll be just fine before we know it.
As for now, home directions include dressing changes, no soaking (bath or pool) for 2 weeks, no shower for first 2 days, no lifting more than 5 lbs (hahahaha) and no strenuous activity. She is loving her Nana & Papa (saying both now) and the ice cream and tickles that come with them.
Thank you for all of the well wishes and prayers. We have our first follow-up appt at Duke with Dr. Fuchs next Tues (May 3rd). We'll keep you updated! Sorry for the delay, I've been busy catching up on baby snuggles!
Sunday, April 24, 2011
Not for those with weak stomachs - Meningocele Manque
So in addition to the fatty filum terminale tether at the bottom of Kennedy's spinal cord, her other type of tether (originally thought to be a lipomyelomeningocele) was actually determined to be a meningocele manque. Below is a picture of what one may look like. Note: this is not a picture from Kennedy's surgery.
Meningocele manqué refers to an element of dorsal tethering bands composed of fibrotic or atretic neural tissue connecting the spinal cord to dura or surrounding structures. They are usually found incidentally during surgical exploration for other elements. *from Medscape Article on TCS & OSD
It is a form of spinal dysraphism where nerve roots and fibrous bands tether normal neural structures. This is exactly what Kennedy had going on. She had nerves and fibrous bands attaching to her spinal cord which was stretching and pulling it.
It is a form of spinal dysraphism where nerve roots and fibrous bands tether normal neural structures. This is exactly what Kennedy had going on. She had nerves and fibrous bands attaching to her spinal cord which was stretching and pulling it.
Saturday, April 23, 2011
Up Day
We made it! (Kind of) Today is UP day!
Dr. Fuchs came in this morning and approved her bed to be elevated. Hurray! The nurse just received the order and raised it 30 degrees (9:15am). Kennedy clapped and smiled more than she ever has! It was so funny! If she's doing well, they'll raise it to 45 degrees at noon! It's a happy day! So far, so good. We'll be watching for drainage and signs of discomfort. But, we aren't going to have any of that!!!
Yesterday was an awesome day. Kennedy was happy, slept well, and enjoyed some awesome visits. Thank you to Eve & Nicole, Jason, Cassie & Ethan, and Anna & Drew.
This morning Kennedy had another sponge bath and we tried jammies too. Dr. Fuchs said if all goes well tomorrow when we get her all the way up, she can go home. So we are really hoping that happens!
Dr. Fuchs came in this morning and approved her bed to be elevated. Hurray! The nurse just received the order and raised it 30 degrees (9:15am). Kennedy clapped and smiled more than she ever has! It was so funny! If she's doing well, they'll raise it to 45 degrees at noon! It's a happy day! So far, so good. We'll be watching for drainage and signs of discomfort. But, we aren't going to have any of that!!!
Yesterday was an awesome day. Kennedy was happy, slept well, and enjoyed some awesome visits. Thank you to Eve & Nicole, Jason, Cassie & Ethan, and Anna & Drew.
This morning Kennedy had another sponge bath and we tried jammies too. Dr. Fuchs said if all goes well tomorrow when we get her all the way up, she can go home. So we are really hoping that happens!
Friday, April 22, 2011
No news is good news
Today is Day 5 of being flat.
Day 4 - I didn't feel like writing. We had a very good day! Kennedy started rolling and she pushed up on all 4's twice so we had to tell her to lay back down (and help her to do so). For the most part though, she's stayed put. It's amazing. The dr's tell you that your baby has to be flat for 2-3 days for some tethers and 5 days for other tethers (like Kennedy's) and you just think, they don't know my baby! How are they going to do that? But they just do! Kennedy has really not tried to move much. The 1st 48 hours she hurt too much to do anything and screamed at you when you touched her. The next 24 hours she was content and just layed around and got very mad at you when you moved her but tolerated touching okay. The last 24 hours we've been through, she has still layed around most of the time but alternates herself between her side, back, and belly without help. She still cries out when we change her diaper but other than that, she is pretty happy or sleeping most of the time. Angie came and brought us dinner! Yummmy!!!
Kennedy is eating a little more too, baby peaches, home fries, applesauce, yogurt, cheese, juice, and formula.Grandma gave her a sponge bath yesterday and the neurosurgery team came and changed her bandage. Nick & I had gone out to lunch and missed it but I understand it is about 4" in length. It is longer than originally planned because her tethers extended lower than the MRI suggested. Neurosurgery says we'll be able to get her up sometime tomorrow with possible discharge tomorrow but more likely scheduled for Sunday. Easter at home - won't that be nice? We are really hoping so because my parents, Nick's parents, and Nick's brother and our nephew can all be there. I don't think I'll be cooking but I don't care if we end up having pizza - we can put ham on it right? :)
Day 4 - I didn't feel like writing. We had a very good day! Kennedy started rolling and she pushed up on all 4's twice so we had to tell her to lay back down (and help her to do so). For the most part though, she's stayed put. It's amazing. The dr's tell you that your baby has to be flat for 2-3 days for some tethers and 5 days for other tethers (like Kennedy's) and you just think, they don't know my baby! How are they going to do that? But they just do! Kennedy has really not tried to move much. The 1st 48 hours she hurt too much to do anything and screamed at you when you touched her. The next 24 hours she was content and just layed around and got very mad at you when you moved her but tolerated touching okay. The last 24 hours we've been through, she has still layed around most of the time but alternates herself between her side, back, and belly without help. She still cries out when we change her diaper but other than that, she is pretty happy or sleeping most of the time. Angie came and brought us dinner! Yummmy!!!
Thursday, April 21, 2011
Tips for other TCS parents
1. If your child uses a pacifier, BRING IT! Bring several! Kennedy was in a lot of pain, especially the first 48 hours and the pacifier soothed her.
2. Bring your child things from home: toys they love to play with and cuddle with, blankets that smell like home, and any security item they may be attached to. For Kennedy, her softest blanket has been helpful. We forgot her glowing, musical seahorse which I KNOW would have helped but my parents went home and are bringing it back today.
3. Bring music and movies. Kennedy has fallen asleep so many times to our lullabye music on my Ipod and I found bringing the Ipod docking station was helpful.
4. Bring snacks and a cooler for drinks. The cafeteria is expensive. For example, a 16oz bottle of soda here is $1.69 a bottle! Here at Duke, our room has a mini fridge and the floor has ice and water (along with cups). Also, check and see if your hospital has a Ronald McDonald room on one of the pediatric floors. Ours does so we use the microwave to warm meals friends have brought. Additionally, they have drinks and snacks you can enjoy in their room. Ronald McDonald House Charities You can search for a place to stay as well as check to see if there are rooms in your hospital such as the room at Duke we use. One other note, ours has laundry facilities which is nice because most hospital rooms don't have a ton of room for lots of luggage.
5. If friends offer to help, ACCEPT. It's hard for me, but I realize we enjoy the break of worrying by spending time with our visitors and also, their generosity may help you with your checkbook and your belly. Our dear friends have brought gifts for Kennedy, snacks for us, and meals for us. It's really been so nice. On a side note, after going through this, I have decided that if I ever have a loved one going through a tough time, I will be specific in what I offer. I will not tell another family "Let me know if I can help" ever again. Even though the generosity behind that statement is wonderful, heartfelt, and so very meaningful, most families don't like to ask for help. Additionally, it's hard to know what help we might need. In the future, my goal will be to offer two choices such as: "Can I bring you a meal or would picking up some of your laundry and returning it be more helpful?" for example. That way, the family can easily make a choice without having to ask or think too hard about how I can help. I now have lots of ideas how to help others and I intend to reach out further in the future as others have recently done for us. I definitely do not post this comment to sound ugly to anyone who has reached out to me. Everyone has meant well, more than well. They've extended their love to us. And you do want families to know you are there for them for anything but personally, I've found specifics to be more helpful. Perhaps it's just because I'm the type of person who hates to ask for help.
But, I bet I'm not alone...
6. Bring things to make YOU comfortable - sleeping bags, pillows, blankets, camping chairs, slippers, laptops, games, books, movies, music, snacks, pajamas... the list can be whatever YOU want it to be. Trust me, the nurses have seen it all. This hospital room is your home for about a week so get rest so you can be your best for your child when they need you.
7. One thing I'm doing through this blog, taking pictures and videos, and journaling, is documenting this experience. Kennedy is 11 months old so she will not remember this - thank goodness! However, when she asks about the 4 inch scar on her spine one day or why she has to go to these appointments all the time, I can show her why. I want her to be proud of how strong she is before she ever knew what the word even meant. In my personal dictionary, Kennedy's picture and being are the definition of strong. I want to be just like her one day!
8. Don't forget chargers and batteries! Phones, laptops, Ipods, GPS', cameras, video cameras, toys, etc
9. Bring pictures from home. Tape them in places your child can see them. Kennedy has loved the pictures of her cousin and I wish I'd brought one of her cat because she asks for him every time she wakes up. "Buh?" (aka Buzzy)
Helpful Things People Have Done For Us Or Things That You Can Ask Friends & Family For:
1. snacks/drinks/meals while you are in the hospital if they are close by - healthy things are not abundant so families may really appreciate a fruit salad or another healthy snack
2. frozen meals for when you return home - you will be tired, have lots of appts, etc
3. singles for vending machines
4. VISA gift cards that can be used anywhere for anything (delivery, gift shop, cafeteria, drug store, etc)
5. time visiting, phone calls, emails, Skype chat sessions
6. Mylar balloons - Kennedy loves the ribbon and the balloon itself - has probably been her favorite gift
7. A Netflix movie from your account is easy to drop off and easy for the family to return because you just drop it in the mailbox when you are done with it!
*To MY family and friends, please understand this specific post is for OTHER TCS FAMILIES or OTHER FAMILIES WHO WILL HAVE A CHILD IN THE HOSPITAL FOR AN EXTENDED TIME. These are ideas I have come up with which may help them as they face what we have already been through. Advice from other families in the same situation, is not something I had a lot of so I'm simply trying to provide that to them. Please do not think I have not appreciated every facebook comment, blog comment, email, phone call, text message, etc because I HAVE... WE HAVE! The outpouring of love and support is in fact, overwhelming. I had no idea how many people loved my daughter. So thank you, from the bottom of our hearts for every single gesture.
2. Bring your child things from home: toys they love to play with and cuddle with, blankets that smell like home, and any security item they may be attached to. For Kennedy, her softest blanket has been helpful. We forgot her glowing, musical seahorse which I KNOW would have helped but my parents went home and are bringing it back today.
3. Bring music and movies. Kennedy has fallen asleep so many times to our lullabye music on my Ipod and I found bringing the Ipod docking station was helpful.
4. Bring snacks and a cooler for drinks. The cafeteria is expensive. For example, a 16oz bottle of soda here is $1.69 a bottle! Here at Duke, our room has a mini fridge and the floor has ice and water (along with cups). Also, check and see if your hospital has a Ronald McDonald room on one of the pediatric floors. Ours does so we use the microwave to warm meals friends have brought. Additionally, they have drinks and snacks you can enjoy in their room. Ronald McDonald House Charities You can search for a place to stay as well as check to see if there are rooms in your hospital such as the room at Duke we use. One other note, ours has laundry facilities which is nice because most hospital rooms don't have a ton of room for lots of luggage.
5. If friends offer to help, ACCEPT. It's hard for me, but I realize we enjoy the break of worrying by spending time with our visitors and also, their generosity may help you with your checkbook and your belly. Our dear friends have brought gifts for Kennedy, snacks for us, and meals for us. It's really been so nice. On a side note, after going through this, I have decided that if I ever have a loved one going through a tough time, I will be specific in what I offer. I will not tell another family "Let me know if I can help" ever again. Even though the generosity behind that statement is wonderful, heartfelt, and so very meaningful, most families don't like to ask for help. Additionally, it's hard to know what help we might need. In the future, my goal will be to offer two choices such as: "Can I bring you a meal or would picking up some of your laundry and returning it be more helpful?" for example. That way, the family can easily make a choice without having to ask or think too hard about how I can help. I now have lots of ideas how to help others and I intend to reach out further in the future as others have recently done for us. I definitely do not post this comment to sound ugly to anyone who has reached out to me. Everyone has meant well, more than well. They've extended their love to us. And you do want families to know you are there for them for anything but personally, I've found specifics to be more helpful. Perhaps it's just because I'm the type of person who hates to ask for help.
But, I bet I'm not alone...
6. Bring things to make YOU comfortable - sleeping bags, pillows, blankets, camping chairs, slippers, laptops, games, books, movies, music, snacks, pajamas... the list can be whatever YOU want it to be. Trust me, the nurses have seen it all. This hospital room is your home for about a week so get rest so you can be your best for your child when they need you.
7. One thing I'm doing through this blog, taking pictures and videos, and journaling, is documenting this experience. Kennedy is 11 months old so she will not remember this - thank goodness! However, when she asks about the 4 inch scar on her spine one day or why she has to go to these appointments all the time, I can show her why. I want her to be proud of how strong she is before she ever knew what the word even meant. In my personal dictionary, Kennedy's picture and being are the definition of strong. I want to be just like her one day!
8. Don't forget chargers and batteries! Phones, laptops, Ipods, GPS', cameras, video cameras, toys, etc
9. Bring pictures from home. Tape them in places your child can see them. Kennedy has loved the pictures of her cousin and I wish I'd brought one of her cat because she asks for him every time she wakes up. "Buh?" (aka Buzzy)
Helpful Things People Have Done For Us Or Things That You Can Ask Friends & Family For:
1. snacks/drinks/meals while you are in the hospital if they are close by - healthy things are not abundant so families may really appreciate a fruit salad or another healthy snack
2. frozen meals for when you return home - you will be tired, have lots of appts, etc
3. singles for vending machines
4. VISA gift cards that can be used anywhere for anything (delivery, gift shop, cafeteria, drug store, etc)
5. time visiting, phone calls, emails, Skype chat sessions
6. Mylar balloons - Kennedy loves the ribbon and the balloon itself - has probably been her favorite gift
7. A Netflix movie from your account is easy to drop off and easy for the family to return because you just drop it in the mailbox when you are done with it!
*To MY family and friends, please understand this specific post is for OTHER TCS FAMILIES or OTHER FAMILIES WHO WILL HAVE A CHILD IN THE HOSPITAL FOR AN EXTENDED TIME. These are ideas I have come up with which may help them as they face what we have already been through. Advice from other families in the same situation, is not something I had a lot of so I'm simply trying to provide that to them. Please do not think I have not appreciated every facebook comment, blog comment, email, phone call, text message, etc because I HAVE... WE HAVE! The outpouring of love and support is in fact, overwhelming. I had no idea how many people loved my daughter. So thank you, from the bottom of our hearts for every single gesture.
Wednesday, April 20, 2011
Day 3 Update
Day 3 was a good day! Personality was abundant at times and that made us more and more excited that surgery was a success! Her nurse removed her IV this morning because Kennedy is doing so well drinking juice, formula, and now even taking some applesauce and yogurt!
More visitors today - Angie and later Adam! Thanks friends!
Unique note from today, our day nurse Susan has a daughter who was born with a tethered spinal cord. Her daughter is now 13 and doing very well. It was great to be able to ask her questions and converse candidly with her about the experiences we've both had.
Dr. Fuchs visited our room after 9pm after a long day in surgery and said she looks great. We will see him again tomorrow for another check up but at this point, we see great improvement in Kennedy's temperament, movement, and sleep so we go to bed this evening - very happy parents.
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