This is going to be a little different than my previous posts about taking care of you.
I'm going to title this post..
Go on and Cry.... (makes me think of the song)
When Toby was in the NICU a lady whose son went to my college came to visit me one afternoon. This was about the third week of our stay and I was just ready for the whole ordeal to be over. Her son had Spina Bifida and she came to just sit and talk and answer any questions that I might have. Well, I am sure I overwhelmed her with my ridiculous amount of questions. and you know I can barely remember some of her answers. But one thing she said to me has stuck out almost 4 years later. You know the kind of thing that sticks so bad that you can even hear the inflection in the person's voice when you think it over in your head.
In a somewhat sad and tired voice. She said, "Kari, You're gonna cry" but with a smile on her face she said, "and it's okay." I thought at the time this was unusual. But she said it quite a few times and therefore it seemed very significant to her. I thought I had cry all my tears out. My son was here and how could I cry anymore. I knew there would be hard times, hard surgeries and things of that nature in which I might cry, but now was not the time.
What I didnt realize was how true those words were. There will be days when there will be no reason, no significant thing that happened, but you will cry. There will be days when a thought will knock the breath right out of you and you will cry. I child will run past you with his little legs and you just might cry. Sometimes I feel guilty for crying. I have my son. There are so many families out there fighting such scary things. Three families I know of that just recently lost their children to cancer. There are families who have multiple miscarriages or children in the NICU fighting for the very next breath. I have my son. But needless to say, You most likely will cry. There will be sadness.
But then comes the next part, "And it's Okay."
I'm so gald she added those three little words on the end. It is okay. And that is why I wanted this post to go under the taking care of you. It's not a makeup tip, or hair tip or diet tip. But how true is it that crying and taking that time to mourn and heal is really taking care of yourself. It's okay to cry. It doesn't mean you love your child any less or that you feel like you have it worse off than another family. It's just crying and it's going to happen and.....It's Okay.
You get up, dry your eyes, pray for strength and you keep going. And you know the funny part? That day when you felt like your heart was breaking is so easily forgotten with the next smile from your child.
Wednesday, March 31, 2010
Monday, March 29, 2010
clubbed feet???
I've been late on a few of my posts so I thought maybe this time I could be a little early :)
I wanted to talk about clubbed feet- this is something that we are currently in the process of correcting for Carson, and it has been a little overwhelming not knowing much about it--- I've had to learn as I go. So, I'd like to share my new experience in hope to help. Clubbed feet is the improper rotation of the ankle. It makes the feet curve improperly. It really is a very common occurrence and is more common when a birth defect like Spina Bifida is present. Please note that clubbed feet is not cleft feet (which is split-feet). VERY DIFFERENT!!! I made this mistake when we first received the diagnosis in utero that Carson's feet were clubbed. I thought the dr. said cleft. NO NO NO. I suppose cleft is possible but it is not common.
Clubbed feet are most commonly corrected today by using the Ponseti method. It is subtle manipulation of the foot using casts and bracing. The earlier you begin the correction the better (as I have learned the hard way). Let me add here that you may have to get pushy. :) We were constantly put off on getting started, and I was also told it was no big deal. The reason, I just found out, was they wrote Carson off as it being "necessary" they so rudely and ignorantly determined he probably wont walk so why hurry, or really even bother. We were also told that we should just wait and have the corrective surgery performed around the 9-12 months mark. This was another recommendation based upon him not walking. I googled ( a blessing and a curse) the surgery and found that the surgery is often ineffective and most times more debilitating.
Ok, so getting started is easy--- x-rays, pictures, and then casts. Typically it requires 5-10 casts, changed weekly to correct the foot. After the casting, braces are used full- time for 3-4 months, and then just nightly for 2-3 years. Each case is a little different depending upon the individual's foot.
Today, Carson received his first cast. It bothers me far more than it bothers him. It is awkward. He doesn't fit quite right in the carseat, in the bumbo, on my lap, in my arms, in his clothes. I have resorted to "let's wear onesies" and "let's go back to changing your diaper on your tummy" again. Like everything else though, I'm sure that after a few days we won't even notice, and it will be normal. Weird!! will happen when the casts come off, and Carson has miraculously lost some weight. :) LOL!! such is our journey.
I wanted to talk about clubbed feet- this is something that we are currently in the process of correcting for Carson, and it has been a little overwhelming not knowing much about it--- I've had to learn as I go. So, I'd like to share my new experience in hope to help. Clubbed feet is the improper rotation of the ankle. It makes the feet curve improperly. It really is a very common occurrence and is more common when a birth defect like Spina Bifida is present. Please note that clubbed feet is not cleft feet (which is split-feet). VERY DIFFERENT!!! I made this mistake when we first received the diagnosis in utero that Carson's feet were clubbed. I thought the dr. said cleft. NO NO NO. I suppose cleft is possible but it is not common.
Clubbed feet are most commonly corrected today by using the Ponseti method. It is subtle manipulation of the foot using casts and bracing. The earlier you begin the correction the better (as I have learned the hard way). Let me add here that you may have to get pushy. :) We were constantly put off on getting started, and I was also told it was no big deal. The reason, I just found out, was they wrote Carson off as it being "necessary" they so rudely and ignorantly determined he probably wont walk so why hurry, or really even bother. We were also told that we should just wait and have the corrective surgery performed around the 9-12 months mark. This was another recommendation based upon him not walking. I googled ( a blessing and a curse) the surgery and found that the surgery is often ineffective and most times more debilitating.
Ok, so getting started is easy--- x-rays, pictures, and then casts. Typically it requires 5-10 casts, changed weekly to correct the foot. After the casting, braces are used full- time for 3-4 months, and then just nightly for 2-3 years. Each case is a little different depending upon the individual's foot.
Today, Carson received his first cast. It bothers me far more than it bothers him. It is awkward. He doesn't fit quite right in the carseat, in the bumbo, on my lap, in my arms, in his clothes. I have resorted to "let's wear onesies" and "let's go back to changing your diaper on your tummy" again. Like everything else though, I'm sure that after a few days we won't even notice, and it will be normal. Weird!! will happen when the casts come off, and Carson has miraculously lost some weight. :) LOL!! such is our journey.
Preparing for clinic
A great topic was presented on March 18: "Clinic day must haves" and I wanted to follow up with an example of something we take to clinic every time. When Esther-Faith was first born, we went to clinic every three months. Then it became every four. And now, every six months.
But no matter what, we take a couple of summaries with us every time. Some of the things we include are specific to Esther-Faith's diagnosis, but we take them to keep us on track and to give a quick update to some doctors that she ONLY sees at clinic.
The information we take has changed over time. For example, to the clinic this month, we took a summary for urology and a general summary for her chart. Sometimes we have more info and questions for the physiatrist and the physical therapist. Or for the orthotics specialists. But we find that we ALWAYS refer to the summaries when we get overwhelmed or need to remember what questions we wanted to ask. Because we prepared them ahead of time.
Not that we've never been blind-sided. Cause we have been. By hip x-rays, and an extra CT, and some other stuff. We've met new doctors, and we've raised our voices. But in the end, we find the summaries to be very helpful. And it is great to go over the past updates to see how far Esther-Faith has come.
Some examples:
General:
The information we take has changed over time. For example, to the clinic this month, we took a summary for urology and a general summary for her chart. Sometimes we have more info and questions for the physiatrist and the physical therapist. Or for the orthotics specialists. But we find that we ALWAYS refer to the summaries when we get overwhelmed or need to remember what questions we wanted to ask. Because we prepared them ahead of time.
Not that we've never been blind-sided. Cause we have been. By hip x-rays, and an extra CT, and some other stuff. We've met new doctors, and we've raised our voices. But in the end, we find the summaries to be very helpful. And it is great to go over the past updates to see how far Esther-Faith has come.
Some examples:
General:
- We included info about her KAFO's, walker, wheelchair, and use of all three.
- We included some social information (that she played soccer in the fall).
- We included information about what ground we thought she lost while hospitalized in January and February.
- We also included some information important to us and to her. That she likes dogs. That she makes up songs. That she was the flower girl in a wedding. We think it is important that the doctors see her as a child first and by her diagnoses second.
Urology:
- We include her cathing schedule.
- What she does to "help" with the cathing.
- Any problems we've had (UTIs, bladder washes, etc...)
- We include a section called "challenges" where we details some of the issues we've had. Esther-Faith is learning to cath herself, and this is where we talk about that progress (or this time, setbacks because of the ruptured appendix).
- We include two sections called "fluid intake/food" and "output" where we detail what she typically eats and when and what she voids. We don't take detailed records anymore, but we do pay attention to how much we get when she gets cathed. This helps the urologist determine what, if any, tests are necessary. This is where we also detail any questions or issues we're having with her bowel management program.
We find that these reports really keep us on track with the doctors during clinic. Ultimately, we are the expert on our child and we want to be seen as such with the doctors.
I'm more than happy to send one of our actual reports if you are interested. Just email me at ohiohennhouse@gmail.com.
~Karin.
(from the HennHouse)
Tuesday, March 23, 2010
Planning
Hi there!
I frequently see this question, "What do I get at my shower now?" or "What will I need for my baby now that I found out about spina bifida?" I remember pondering these very things while I was pregnant. I remember being just so worried and so overwhelmed while I was waiting for Carson to arrive. Well... he's here and through these last 4 months I have learned that I had no reason to over- worry about all the preparations. Honestly... There is not a difference. :) You are going to need all the same things that you would if your baby was born without spina bifida. Crib, stroller, swing, carseat, clothes, BURP RAGS (bold because I don't believe you can have too many), baby Bjorn, BOPPY!!!, Bumbo seat, toys, bottles, PACIFIERS, etc. Everything baby! You may be using things a little differently at first but you will be so grateful that you didn't go out and make-over your registry.
If your baby has "not on back" restrictions, then they will get alot of tummy time. :) During a diaper change you have to put the diaper on backwards. LOL I remember when Carson was able to be changed "normal" my husband still tried to place the diaper upside down.
Let me also give you some tips from my experience.
*Clothes: Don't get snaps in the front for the beginning, and get loose fitting clothes.
*If your baby has clubbed feet you will want cloth shoes- they flex to fit the foot.
* Bath: Get a lounger not a tub.
* Boppy--- your new best friend!!I have 2- one at home, and the other in the car for wherever I go- church or a friend's house.
* Pacifier- I learned this at the hospital and love it! Use soothie pacifiers, and cut the tips off so that it is rectangular not round. This works wonders when they have to sleep on tummy or side.
It is very important to do all the usual and fun planning before your baby comes--- do not, I repeat do not skimp on any of the experiences of having a baby.
I frequently see this question, "What do I get at my shower now?" or "What will I need for my baby now that I found out about spina bifida?" I remember pondering these very things while I was pregnant. I remember being just so worried and so overwhelmed while I was waiting for Carson to arrive. Well... he's here and through these last 4 months I have learned that I had no reason to over- worry about all the preparations. Honestly... There is not a difference. :) You are going to need all the same things that you would if your baby was born without spina bifida. Crib, stroller, swing, carseat, clothes, BURP RAGS (bold because I don't believe you can have too many), baby Bjorn, BOPPY!!!, Bumbo seat, toys, bottles, PACIFIERS, etc. Everything baby! You may be using things a little differently at first but you will be so grateful that you didn't go out and make-over your registry.
If your baby has "not on back" restrictions, then they will get alot of tummy time. :) During a diaper change you have to put the diaper on backwards. LOL I remember when Carson was able to be changed "normal" my husband still tried to place the diaper upside down.
Let me also give you some tips from my experience.
*Clothes: Don't get snaps in the front for the beginning, and get loose fitting clothes.
*If your baby has clubbed feet you will want cloth shoes- they flex to fit the foot.
* Bath: Get a lounger not a tub.
* Boppy--- your new best friend!!I have 2- one at home, and the other in the car for wherever I go- church or a friend's house.
* Pacifier- I learned this at the hospital and love it! Use soothie pacifiers, and cut the tips off so that it is rectangular not round. This works wonders when they have to sleep on tummy or side.
It is very important to do all the usual and fun planning before your baby comes--- do not, I repeat do not skimp on any of the experiences of having a baby.
Monday, March 22, 2010
Taking Care of You
I think its important to look nice, for ourselves, our husbands and our children. We send a message to everyone we come in contact with when we look like we are taking care of. Unfortuantly you are treated differently too. I purposeful dress nice and try and look as professional as possible when I take Toby to SB Clinic appointments. I want to be taken seriously and want to be listened to but I know (just like all you know) that you have to earn the respect of these doctors.
So just wanted to share a couple of my tried but true little beauty secrets. These are not original of me. They come from all sorts of places, "Real Simple Magazine" 101 Best Kept Beauty Secrets and of course the internet!!!
So dig through your drawers for something without a stain and try this out:
Have a nice pink blemish on your face?? Lovely right? Makes you seem as grown up as about a 16 year old? Try this: Take some eye redness reliever drops put a few drops on a cotton ball and hold in to the blemish for about 15 seconds. The same medication in the drops that takes out red in eyes will help diminish the pink. Pretty awesome right?
An incredibly long night? Up late with feedings or laundry? Go buy some super cheap wet and wild white eyeliner. Put just a small amount on the inside corners of your eyes and blend. INSTANT wakeup. (a cup of coffee might help too)
So that's it for now! I hope you are inspired.
So just wanted to share a couple of my tried but true little beauty secrets. These are not original of me. They come from all sorts of places, "Real Simple Magazine" 101 Best Kept Beauty Secrets and of course the internet!!!
So dig through your drawers for something without a stain and try this out:
Have a nice pink blemish on your face?? Lovely right? Makes you seem as grown up as about a 16 year old? Try this: Take some eye redness reliever drops put a few drops on a cotton ball and hold in to the blemish for about 15 seconds. The same medication in the drops that takes out red in eyes will help diminish the pink. Pretty awesome right?
An incredibly long night? Up late with feedings or laundry? Go buy some super cheap wet and wild white eyeliner. Put just a small amount on the inside corners of your eyes and blend. INSTANT wakeup. (a cup of coffee might help too)
So that's it for now! I hope you are inspired.
By way of introduction
I've thought all weekend about how I want this post to go... Reveal a lot? Reveal a little? Give a teaser? Spill my soul?
And I've not really landed on an approach...
My name is Karin, and I'm a new writer here at Spina Bifida Kids. Because I have a four-year-old daughter who is living with Spina Bifida. But there is so much more to my story...
We never intended to have birth children. We never even tried. In fact, we are in that 0.01% that you can read about in any birth control warning label. We intended to build our family through adoption. Specifically adoption through the foster care system. We both felt a "calling" if you will, toward adoption before we even met each other.
We finalized our first adoption in February of 2005. In March, our sons, Isaiah, age 8 (13 now) and Isaac, age 4 (9 now), started praying for a sister. Three times a day they prayed that they could have a sister. It was sweet. My Tim and I would peek at each other and sort of giggle each time. We knew that we would be adopting more BOYS, but their heart for a sister really started to work on us and we started to consider adopting a sibling group that included a girl.
By Mother's Day that year, I was pregnant.
Aside from being in complete shock and denial for the first six months of the pregnancy, it seemed to go well. I wasn't nauseous, but I could only keep down oranges and mashed potatoes. The boys were SURE it was a girl. Tim and I decided not to find out. We thought--this was one of the last great surprises in life.
I love surprises.
Three weeks before our child was born, we received the diagnosis of spina bifida and severe hydrocephalus.
I wasn't sure about surprises at that point...
And in January of 2006, just 11 months after our first adoption, Esther-Faith was born. Tim met her first, walked over to where they had me strapped down for the emergency c-section, and said, "We have a daughter. She's perfect."
In all my life I have had a few moments that sustain me when everything else seems to fall apart. That is one of those moments. He was overjoyed. And even though her spinal cord was outside of her body, she was perfect.
And so it is today.
No matter what we go through as a family, we choose to look beyond the diagnoses that each of our kids have received. Some of them are severe and require a HUGE amount of work. But we choose to see our kids through the lens of "perfect."
-----
I'll be sharing many of our experiences with Esther-Faith here, but if you want to know how the others are doing, you can catch up with us over at the HennHouse.
And I've not really landed on an approach...
My name is Karin, and I'm a new writer here at Spina Bifida Kids. Because I have a four-year-old daughter who is living with Spina Bifida. But there is so much more to my story...
We never intended to have birth children. We never even tried. In fact, we are in that 0.01% that you can read about in any birth control warning label. We intended to build our family through adoption. Specifically adoption through the foster care system. We both felt a "calling" if you will, toward adoption before we even met each other.
We finalized our first adoption in February of 2005. In March, our sons, Isaiah, age 8 (13 now) and Isaac, age 4 (9 now), started praying for a sister. Three times a day they prayed that they could have a sister. It was sweet. My Tim and I would peek at each other and sort of giggle each time. We knew that we would be adopting more BOYS, but their heart for a sister really started to work on us and we started to consider adopting a sibling group that included a girl.
By Mother's Day that year, I was pregnant.
Aside from being in complete shock and denial for the first six months of the pregnancy, it seemed to go well. I wasn't nauseous, but I could only keep down oranges and mashed potatoes. The boys were SURE it was a girl. Tim and I decided not to find out. We thought--this was one of the last great surprises in life.
I love surprises.
Three weeks before our child was born, we received the diagnosis of spina bifida and severe hydrocephalus.
I wasn't sure about surprises at that point...
And in January of 2006, just 11 months after our first adoption, Esther-Faith was born. Tim met her first, walked over to where they had me strapped down for the emergency c-section, and said, "We have a daughter. She's perfect."
In all my life I have had a few moments that sustain me when everything else seems to fall apart. That is one of those moments. He was overjoyed. And even though her spinal cord was outside of her body, she was perfect.
And so it is today.
No matter what we go through as a family, we choose to look beyond the diagnoses that each of our kids have received. Some of them are severe and require a HUGE amount of work. But we choose to see our kids through the lens of "perfect."
-----
I'll be sharing many of our experiences with Esther-Faith here, but if you want to know how the others are doing, you can catch up with us over at the HennHouse.
Saturday, March 20, 2010
progress!!!
Oh Boy!!! Carson is napping.. so I here I go flying through a post!! In advance I am asking for your forgiveness regarding any errors in grammar, or spelling. I just wanted to talk some more about Carson's therapy program. I wanted to tell you that I have already seen some improvement- so when a dr. or a therapist looks at you and says, "it probably won't work"- laugh at them, a big huge belly laugh. You can also envision yourself spitting at them in the face ( I did this the other day, and it felt so good) lol!!! :)
I have been wiggling Carson's legs at various times throughout the day, as play. It has turned the diaper change from a screaming fit into a more manageable and sometimes smiling adventure. And, the best part last night we had a birthday party to attend which got us home past Carson's bedtime. Well, he was asleep in his carseat. I didn't want a meltdown ... so I said let's lay him down and I'll change him the old-fashioned (on his tummy) way, and maybe he'll stay asleep. He woke up. :) I'm so g;ad he did though.. he wiggled and wiggled and so did his legs!!!!!
It works!!! and God is so very good!!!!
I have been wiggling Carson's legs at various times throughout the day, as play. It has turned the diaper change from a screaming fit into a more manageable and sometimes smiling adventure. And, the best part last night we had a birthday party to attend which got us home past Carson's bedtime. Well, he was asleep in his carseat. I didn't want a meltdown ... so I said let's lay him down and I'll change him the old-fashioned (on his tummy) way, and maybe he'll stay asleep. He woke up. :) I'm so g;ad he did though.. he wiggled and wiggled and so did his legs!!!!!
It works!!! and God is so very good!!!!
Thursday, March 18, 2010
Featured Child: Autumn
Our little Autumn is an inspiration to our family. Before she was born we knew she had spina bifida, hydrocephalus, and ACII Malformation. We trusted God from day one that He would take care of our daughter and never questioned why this was happening to our baby girl. We felt blessed that it was "just" spina bifida and felt we could handle taking care of a child with special needs. After she was born, Autumn had her back closure and shunt surgery and was doing pretty well. About 2 days later though she would desat anytime she was fed by mouth and having episodes at night where she would completely stop breathing, turn blue, and the nurses would have to bag her until she would start breathing on her own again. We then realized her ACII was very severe which only happens in about 5% of babies with spina bifida. She was put on CPAP and then we did a decompression surgery to see if that would relieve some of the pressure on her ACII and stop the episodes. Well, it did not and we could not get her off the ventilator after the surgery. We then had to make the dreaded decison to give her a trach so that she could come home with us. We were ready to deal with a child who may or may not walk or who may have some bladder/bowels issues but taking care of a child with central apnea and who stops breathing at any time was a completely different story and one we were not prepared for. After 4 months in the hospital and living 6 hours away from home for over 5 months..we were finally able to bring Autumn home. We were concerned how it was going to be caring for a baby with a trach and who was on a ventilator 24/7 and also taking care of the needs of our other 2 children. We had been trained well though and we were ready to set out on this new calling God had placed in our hands. Autumn though has made this journey such a sweet one. She is truly an inspiration to us and always has a smile on her face (even through her tough therapy sessions). She is one determined little girl and finds a way to get what she wants and communicate her needs to us. She is such a joy to be around and touches every heart that she meets. As soon as you look into those big, blue eyes and she flashes her toothy smile you instantly do not feel sorry for her but know that she has been blessed with the strength,love,and joy that most of us spend our entire lives searching for. We are amazed at what she has taught us in her short 16 months of life and can only imagine what she's going to conquer in the years to come. We thank God everyday for our daily reminder by Autumn to choose to be happy in every situation we are given and to live life with a smile on our face. If she can do it daily, so can we! Thanks for letting me share my special girl with all of you.
Clinic Day MUST haves
Id like this to be a reader centered post.
Please comment on the items you absolutely MUST have for going to Clinic. Babies, Toddlers and even older kids. Ill add to the post from the commments!!
Here's a couple of mine to get your mind going
1. change for the vending machine!! (i know goes against my last post, but you do what you got to do sometimes)
2. a jacket or sweater that doesnt wrinkle (throw it in the bag and just take it out when its too cold in one of the rooms)
Okay ladies, so give me some more ideas.
Please comment on the items you absolutely MUST have for going to Clinic. Babies, Toddlers and even older kids. Ill add to the post from the commments!!
Here's a couple of mine to get your mind going
1. change for the vending machine!! (i know goes against my last post, but you do what you got to do sometimes)
2. a jacket or sweater that doesnt wrinkle (throw it in the bag and just take it out when its too cold in one of the rooms)
Okay ladies, so give me some more ideas.
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