Recovery after surgery...

For the last 5 years of her life, Nichole is on a mission to surprise us and challenge any expectations even we - her parents - have of her. This surgery was no different.

First of all, the plan was for Nichole to get ear tubes, at least for one of her ears as there was fluid there. However, when they went in, her ears had no fluid, although the doctor did mention one of her ear drums looked peculiar. Not sure what that means, but I am sure we will talk about it later. In 3 weeks we go back for a check-up and a hearing test.

Recovery was hard. How do you help with pain when your child refuses to take oral medication? I think the chemistry of Tylenol did not feel good going down her throat. She spit most of it out, refused to take it, so I think she was not getting enough relief from her pain. We could get her to drink a little bit, and eat a little bit, but it was hard.

And this is where I discovered that I don't handle my kids in pain well at all. It was hard with Nina, but with Nichole, my feeling of helplessness was even greater. While Nichole cried refusing to take her meds, I was crying too,begging her to take them, yelling in desperation "Nichole, please, take you medicine sweetheart, you have to take it!", and of course making the sisters cry too.

So I got suppositories.

Oh how I love suppositories! Nichole did not mind them that much either. No more crying to get meds, it was so easy and fast she really didn't have a chance to fight it. I tried to avoid it, I mean, who wants to use suppositories? But after that she began perking up and this girl likes to eat noodles and eggs, and drink her juice! So that is what she had for about a week.

Same day we started the suppositories, she started asking for chicken and french fries. Yes, my kid is a McDonald's junkie, and for some reason this was exactly what she wanted to eat. She kept bringing me her coat and shoes and asking to go get them. She is not a fan of a soft diet, and the poor girl has sensory processing issues, so textures are a big thing. That is why we only ate noodles and eggs. Those are okay.

We considered sending her to school today, but she wanted to stay. Next week we are back to normal. praise God!

Oh, and since she is all better now, guess what treat I got her. Asi es! A Happy Meal! 

Update on Nichole's Surgery

This morning, we arrived at 6:15 am at Children's Hospital for Nichole's tonsillectomy, adenoidectomy, and possible ear tubes. It was an early morning, but Nichole was happy as we got out of the car. I kept thinking, she has no idea what is about to happen!

We talked about the surgery with Nichole. We do think she understood it to some extent, and she was mildly cooperative in the morning. That is, until they had her take her pajamas off and put on the hospital gown. I can't figure out how to paste video from my phone here, so check out this linkhttps://www.facebook.com/photo.php?v=10151797109752802 on my Facebook page. It was pretty cute, and you get a pretty good sense of Nichole's communication skills.

Nichole gets pretty worked up with doctors and getting her vitals checked. At first, we thought she would loose it, but she pulled it together.

Here she is, resigned to wear her scrubs and right before surgery.

She is a daddy's little girls, and was happy having daddy with her. Although she did not like daddy getting scrubs on either.

 

 

And here they go, ready for surgery and Nichole is waving good-bye. At this point, she really had no idea that when she saw me again, she would be in pain.

 

They called us to recovery, and Nichole was already sitting on the bed. Wobbly from anesthesia, a wonderful nurse helping her. She was whimpering, mainly when she saw she had an IV. She knew there was something different in her mouth, but when I asked if it hurt she said no, and pointed at the IV to come out.

 

 We hung out at the recovery room for a while. Nichole settled down and was watching Strawberry Shortcake, and later on Curious George. The beauty of technology! They told us that technology works better helping kids with pain and anxiety even compared to drugs. I will have to agree.

After a while, they took us to our room and Nichole nestled with daddy.

 And then when the nurse said she could put her Frog jammies back on, she was one happy girl!

We are waiting. The plan is for us to spend the night. It is a precaution that most hospitals take with kids who have Down syndrome or other special needs to make sure that they are okay going home with oxygen levels, or any complications that might arise.

When Nina had her surgery, due to her oxygen levels we ended up staying there for 2 nights.

How is Nichole doing? So much better than we expected! She is drinking, without us pushing it, she wants to. And eating? She ate an entire plate of noodles, and she was asking for more food as Andy and I were eating.

She is amazing!

The main thing right now, is handling her pain. Which so far we have kept on top of it.

What a trooper we have!

Thank you so much for all of you praying for my sweet girl. We appreciate those prayers more than you know!

Tonsils, Adenoids and Ear Tubes...Oh My!

On Tuesday, our little rascal is getting her tonsils and adenoids out. And if they see fluid behind one of her ears, an ear tube is going in. This mama is not so excited about surgery...

She is just not a good patient. When Nichole is sick, or is not feeling good...watch out!

This is also her very first surgery. She has never had anesthesia. But she has been a hospital patient, and she didn't like it!

It probably doesn't help that our last experience with this surgery was tough. Nina had been home with us for only 4 months when she had this surgery, and it set us back in our bonding/attachment. Not to mention our relationship. Then, after 7 days, she started bleeding, and she was airlifted to Mayo clinic.

I know, I know, this is very rare, but we had "that" complication once already, and I am not looking forward to surgery and recovery.

And I feel bad for my rascal too, because I know there will be pain.

This is my one hope: she loves ice-cream, she can have as much sherbert as she wants where I am concerned, and hopefully she will be drinking.

Keep us in your thoughts and prayers. I will try to update as soon as I can.

Courage and Determination

I have seen great people achieve great things. I have seen athletes push the limits and break world records. I have seen the sweat and tears that come with difficult tasks and the pleasure of seeing those things come to fruition.

Yet I have seen more courage and determination from a little once-orphan-girl that I now have the great pleasure, joy, and honor to call my own. Abandoned at birth, raised without a family, yet now loved and having a place to belong.

Cerebral palsy does not own my daughter. She is a fighter. She is courageous, she is determined!

Almost a year after her rhizotomy (SDR) and look at this girl go!

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Mayo Clinic. Post Rhizotomy. Update

We had a full day today at Mayo Clinic. It has been 6 months since Nina had her rhizotomy, so she got to see the team of doctors and therapists that have been working with her now for almost 2 years! I know I say this every time, but we love Mayo! There is a reason Mayo is considered one of the best in the world.

The quality of the people that work there is the best. Nina is not simply a number, they really do care about her and our family.

We got lots of great suggestions on things to be working on. Lots of great information and referrals too. For example, Nina will be getting new leg braces. She will also be getting fore arms crutches...but now I am getting ahead of the game!

All the doctors and therapists were very pleased with the outcome from the rhizotomy. The fact that she began walking last week was the icing on the cake! Cerebral Palsy sometimes talked about in stages or "involvement." This is given using a scale of 1, 2, 3, 4. Number 1 being "mild" and number 4 being most involved. Nina's spastic diplegia fell into a stage 4, or what you might call, most severe. What her body is able to do now is incredible!

Nina had some bone contractures that seem to be resolving on their own. This is exciting because it means surgery will not be necessary to correct those in the future. We did discuss a possible surgery during the summer. Nina does have bone deformities, and these will most likely have to be fixed. In April we will do another gait analysis and decide all that needs to take place. Hopefully, by then, we will only have to do one surgery and there will be no need for muscle lengthening procedures (this is where they go in and cut a muscle, therefore releasing the tension caused by Cerebral palsy...sounds pleasant, huh?)

I have mentioned before I have a love/hate relationship with Nina's walker. I love it because she can be independent, yet hate it because she does her worst walking with it. After seeing all the different doctors and watching her gait (the way she walks) we thought we would give fore arm crutches a try. They explained it takes kids anywhere from 2 to 6 months to really learn how to use them, but the key is to use them as part of therapy and at home because they really help with stability and gait. Two therapists worked with Nina as she used them. Her posture, balance and gait really seemed a lot better! While it would be great if Nina walks without any special equipment, right now stability and gait are important. I would much rather have her learn how to walk properly, that have her walk with poor posture and resembling a T-Rex. We will see. This is all new to us!

What a privilege to work with these wonderful people at Mayo Clinic as we all work towards helping Nina achieve her best potential!

The people at the Ronald McDonald house are also wonderful people! They serve the families here. They make us feel welcomed. Really, what a blessing this place has been.

Six Months Post Rhizotomy

It has been six months since Nina had her rhizotomy (SDR). I can get so frustrated, thinking that we are not making any progress. But the reality is that Nina's body is so different from what it was 6 months ago. It is absolutely incredible!

I have mentioned before that we have seen progress in her fine motor skills, her attention, her cognition. But the difference in her walk and gait, well, those are astounding! So here it is, I will show you before and after pictures. And remember, this is the difference from before the surgery, and now 6 months later. Absolutely incredible!

I want to show you the difference with no braces on, because that is how you can really see what her body is doing and how it has changed.

BEFORE

Her heels could not touch the ground. She was very high on her toes.

 Can her heels be any higher?

AFTER

 Can you believe these are the same feet?

 And she can even tap the floor with her heel! No toes, just heel!

As far as the surgery goes, the scar is hard to see.

BEFORE

AFTER

The following videos, however, make me emotional. The difference in walk and gait is absolutely incredible! Six months, it has been only 6 months!

BEFORE

AFTER

24 Weeks Post-Rhizotomy

It is hard to believee that it has been 24 weeks since Nina had her SDR surgery. I have not done a very good job at keeping updates on how Nina is doing. I am not the type of person that notices gradual process and I think that makes it hard for me to be objective about the changes in Nina. My initial thought is that things are the same, and that Nina has not made much progress. But that is not true.

A rhizotomy does not only help with walking and gross motor skills. Nina's fine motor skills are actually very good. The only thing she really struggles with are letters. She cannot get letters. Even when tracing letters she has a hard time. She can color and cut, she can draw a picture of a person, and her overall fine motor skills are almost the same as most 5 year olds. Pretty incredible.

We spend a lot of time focusing on walking. A couple of times we thought we had finally turned the corner and we were on the road to walking independently. There have been 2 different times where Nina has walked around the house. On her own. No walker. No help. At school, she uses her wheelchair and her walker. The teacher mentioned that she is beginning to cruise a little and taking small steps on her own.

There are times when it is hard not to get frustrated and wonder if she really wants to walk. We are not sure what it is that will give her the final push so she takes off. But as Andy and I were talking the other day, we realized that Nina is walking. She is actually walking independently, but she has no idea. She thinks we are actually helping her. The last few weeks Andy and I have been holding the back of her shirt with a reassuring "I got you." And she walks. On her own. For as long as she feels us right behind her and feels we are touching her shirt, she can do it. The thing is, we are not doing anything at all, just walking right behind her. If we let go, she feels it and immediately falls and looses her balance. At this point it is not weather Nina will walk or not. She can walk. She is walking! This is a battle of her mind, of believing she can do it. This, I realize, might take a little longer. Yet, we are encouraged, because this girl can walk. She is actually walking!

Nina continues to walk on her toes out of habit. When she uses the walker we remind her of that several times and she gets those heels down no problem, even without her braces on. I am not sure if this is just Nina or if it is common after a SDR.

In a month we go back to Mayo clinic for Nina's 6 month follow up. We are interested to hear what the doctors have to say when they see her again and what their future recommendations will be.

I leave you with a video of Nina walking this afternoon. With Andy holding her shirt. It is not the best quality video but you will see what she does on her own.

Don't forget to enter your name for a book giveaway "A Good and Perfect Gift" by Amy Julia Becker. Just click here and go to that post.

And tomorrow starts Down syndrome awareness month, I am excited! Stick around as I share our journey with Down syndrome for the last 4 years!

Post-Rhizotomy Week 12

It is hard to believe that it has been 12 weeks since Nina had her rhizotomy done. I am one of those people that don't notice change when it is gradual. A pretty bad quality to have when your children have special needs. Just last Sunday a lady from our church mentioned that Nina was walking so much better compared to the week before. I was amazed she had noticed the difference of only a week, but as I thought about it I realize that every week she does get stronger and stronger.

As far as mobility goes, Nina is fully capable of walking. Fear is keeping her from doing this, so we are targeting that fear in any way we can. Andy and I decided that maybe Nina needed an incentive for walking, so we took her to Toys R' Us and told her that when she walks on her own, she will be able to get ANY toy she wants. Anything at all! Thankfully (for our budget) she wants the Rapunzel boat that comes with a Flynn Rider. I am sure she wants this because this is something Ellie wants for her birthday too. Since we gave this incentive, she has been practicing her walking and balance all on her own. Incredible!

We also began using theratogs. Nina's left leg turn in pretty bad, and the theratogs help pull it out a little bit. I does help, but we are pretty sure she will need surgery to correct this.

Photo credit

The leg braces really have helped. What they do is gently stretch her hamstrings, so when she stands, her legs are straighter and she has a better range of motion when she walks. More important, by keeping the muscle "long" as she sleeps, her muscles are working and hopefully growing. Growing is something her muscles did not do due to her spasticity. Long hamstrings mean that she will be able to walk better and move better. They also mean hopefully one less surgery in the future.

Nina still prefers to sit in a W position, but if we remind her, she sits like a pretzel or a ballerina on her own.

When Nina is not using her braces, we also have to remind her to put her heels down, as the toe walking habit is still there. With her braces, her heels touch the ground at all times...unless she is using her walker (reason you have heard me say I have a love hate relationship with the walker)

Nina can balance on her own for a long time if she wants to. Sometimes she balances so well that you think she got it, then fear takes over and she looses her balance. This again, is a confidence thing, but we are slowly getting there. I think 20 seconds is pretty average for her now a days. Although she has even made it a full minute, just once.

Nina is also consistently taking 2 steps on her own when we practice. Now you might think this is nothing, but 2 steps are 2 steps in the right direction. I will take the 2 steps over no steps at all. And 3 steps can become 3, then 4, then more.

Here is a little video of Nina walking. We took it with our camera so the video quality is not very good, but look at this girl trying to walk! I think seeing her best friend Oksana walking really pushed her while we were there. I am telling you, this girl is going to walk!

If you have any questions feel free to ask!

Knee Immobilizers

 When we began to  look at different options to help with Nina's spasticity, one of the first things that we considered were knee immobilizers. These knee immobilizers are supposed to be worn at night while sleeping. However, as we looked at how spastic, or "tight" Nina was, we quickly realized that the knee immobilizers would be too difficult for her to handle. If you remember from the video I posted before her rhizotomy, stretching her leg to make it straight was very painful for her, and there was no way she could have worn these and tolerated them.

The day of her rhizotomy, Nina got her knee immobilizers delivered to the hospital room. Now that the tightness was gone, it was time to start breaking her in into these fancy contraptions.

We began putting them on just for short stretches of time during the day, but the best results are when they are worn all night long. A few days after the rhizotomy, we tried to have Nina wear them at night. She could not sleep.
Every hour she was up crying and winning. It was quite the ordeal. And since our family appreciates sleep, and we were living in the hospital room with her, we usually would take them off after having her wear them 3 to 4 hours at night.

As we talked to her therapists they encouraged us to have her wear these braces at least 3 to 4 hours every day. Having her take rest time or play with the iPad while she was wearing them. With our move and the business of life, getting the knee immobilizers on was only happening about 3 times a week.

Four days ago I was having one of those days where I was frustrated. Frustrated that Nina is able to physically do so much but emotionally and mentally she is stuck. So I did what some of us mommies of kids with special needs do, I asked another mommy whose son has had a rhizotomy if what Nina was doing (or not doing) was normal. Natalie then asked if we had tried knee immobilizers, to which I quickly responded yes but we were not doing those, because we appreciate sleep too much. She encouraged me and said it had taken her son a week to get used to them. Andy and I talked about this, and decided to give it a week.
We talked to Nina about the "bedtime braces" and why it was important for her to wear them. We said she was going to have to wear them every night until her body started to work better. Nina went to bed with the braces no problem, but just an hour after going to bed, she was up and crying. We did the crying and crying until about midnight, where we knew we had to make a choice. Do we keep doing this, or do we stay with it.

I took Nina to my room and explained that she was going to have to sleep with the braces. And that from now on she really was going to have to wear them and it was unacceptable to cry because she was waking everyone up. I gave her a choice: go to your room with your sisters and sleep on your bed, or have to sleep by yourself because you are crying. Of course she chose to go back. It was half an hour later that I heard a little whimper, and just as it came it stopped...she remembered the warning. And then she slept all night long! And for the last 4 days, Nina has been wearing her knee braces all night long! She has not cried, complained, or even woken up. That little stinker! She figured out we had given up before and she was going to try again! But she realized we were serious and that was that!

As you can see from the pictures, the knee immobilizers are big and probably not very comfy. Nina is a trooper! She is doing so well and she is taking it better than I ever could. Because to be honest I would be crying and whining not wanting to wear those and I would not care if I had to go have my own room for as long as I could tell you I was mad I had to wear these big bulky things!

Post-Rhizotomy Week 8

Today marks eight weeks since Nina had her rhizotomy. It seems like it just happened yesterday and at the same time with so many changes in our lives it feels like it happened a long time ago.

Today I want to revisit the 4 main goals we had for Nina before the rhizotomy once we hit the 8 week mark.

1. Nina will stand for 15 seconds independently without upper extremity support.

We are not there yet. We are working on balance, but the longest we have gotten her to stand is 11 seconds. Now, that might sound pretty close to you, but the goal is for her to do this consistently. We can get her to do it for 3 seconds consistently, so we are not close to reaching this goal. Fear is getting on her way. She is terrified of falling and she does not know hot to fall. A fall for her can be very serious, so we actually started working on learning how to fall.

2.Nina will ambulate with reverse walker, demonstrating initial contact with her heel and knee extension throughout stance phase with minimal assistance at her pelvis.

I love the walker and yet I hate the walker. She can take really good steps with her walker...if we remind her to do it. For all other purposes the walker prevents her from walking "normally." For those of you that have kids with Cerebral Palsy, you know exactly what I mean. A walker can be a crutch and kids can use their upper body a lot more than their legs. Another thing to note is that Nina's hamstrings did not grow and they are too short, therefore initial heel contact right now is not an option, but she does some good flat foot contact, which we want to see rather than the toes.

3.Nina will sit in tailor sitting position for 10-15 seconds independently.



What about 30 minutes? yeah, she is doing so so so good with this one! And she begins to redirect herself when she is playing on the floor.

4.Nina will have 10-15 degree increase in her lower extremity range of motion."


She does! And it is incredible!

So as you can see, some goals she has done very well with, others we are still working on.

Nina is actually able to walk on her knees, which she could not do before her surgery. This is so good for her. She is beginning to stand using only one hand from a half kneel and she is also doing okay walking holding on to us with just one hand!

Today I asked the Physical Therapist if she though Nina could benefit from using arm crutches. She responded that of she is not walking independently in 2 weeks we will look into that. Her surprise really surprised me, Nina walking independently in 2 weeks? The PT really feels Nina is not walking because of fear, which is what I have always felt. She says Nina is very strong and she can physically do it, we just need to get her to actually do it.

Nina is so close! So very close! She just needs to want to do it, she needs to brave it out and say, "You know, I am just going to give it a try!"

I will update again in 2 weeks, let's see where Nina is at 10 weeks post-rhizotmy!

Selective Dorzal Rhizotomy: Choosing Mayo Clinic

When we chose to have Nina's Rhizotomy done at Mayo Clinic, we had a few people ask us why we were not going to St. Louis Children's Hospital. If you do a google search on Selective Dorsal Rhizotomies, it is very likely that Dr. Park will come up in your search. As a matter of fact, when I began to connect with other families that had their children have this surgery, all of them but one had gone to St. Louis to have Dr. Parks do the surgery. He is that good!

So what is it about Dr. Park that make people go to St. Louis? For instance, he probably does the largest number of SDR's. With a large number of kids having the same surgery, you get to see a bigger number of positive post rhizotomy outcomes. Because they do so many rhizotomies, they know how to work with insurance! Word of mouth from other parents is powerful! The type of rhizotomy that Dr. Park developed is unique as it is the least intrusive type of rhizotomy there is, which makes recovery easier.

So why did we chose Mayo?

Mayo Clinic has a team approach.  Nina's Pediatric Rehabilitation Doctor, her Physical Therapist, Occupational Therapist, Orthopedic Surgeon, Neurologist, and Neurosurgeon were all involved. We talked to all of them in regards to the SDR, they all collaborated and studied her gait analysis together and each one of them took time to look at the results and at Nina from their own area of expertise. I love that! There is no one man show but rather a group of people coming together and saying, "What can we do here to help" and the reasurrance and confidence in the team approach is something that we really valued.

Dr. Wetjen, does the exact same SDR as Dr. Park. Smaller incision, and shorter recovery.

There are some advantages to being "The Mayo Clinic." I am amazed at how quickly things were set up for Nina. From the gait analysis to getting a wheelchair.

Again, it is Mayo Clinic and they know how to deal with insurance companies. There is also a reason why there are so many people that are able to come from all over the world.

The results are just as good as with Dr. Park. If you look at the number of surgeries that Dr. Park has performed and look at the positive outcome, you will find that Mayo has the same comparable results.

What we liked better at Mayo Clinic.

For us it was the convenience of being closer to home.

We love the team approach. When you walk into Mayo clinic you end up working with a team.

Recovery. (I believe this is pretty significant). I spoke to about 8 parents and they all described the following 2 days after the rhizotomy to be very traumatic. There were a few parents describing their children as having severe muscle spasm, the kids writhing in pain, and screams and tears. I WAS SCARED! I talked to Nina's team about this and they said this is where Mayo does things different. Pain management pre and post rhizotomy is top notch! Nina was on a medication that although made her highly emotional, it really helped with the pain! After the surgery she had a "pain management team" an epidural and several meds in hand to make her comfortable. While it was hard post-surgery, Nina complained mostly about the catheter and about the IV's. We dealt with very little pain and the one time that we needed extra meds, it was taken care of right away. This surgery was a lot easier than her tonsils hands down!

Rehabilitation. The rehabilitation unit at Mayo clinic was the most caring staff I have ever met! We loved the rehab unit! The nurses and Patient Care Assistants went above and beyond what we expected! Nina had a nurse and a PCA at all times. They cared for Nina and for us so well! From doing our laundry to bringing us coffee, these people were incredible. I cannot say anything but good things about the time at the rehab center! Two weeks of intense therapy made easy by these incredibly dedicated staff. The therapists and doctors were superb! Team approach all the way through with a lot of caring and a lot of supporting.

Why chose Mayo Clinic? I would not do it any other way!

As a disclosure, Mayo did not ask me to write this post. I wanted to share our experience with Nina's Rhizotomy, and I would highly recommend Mayo clinic based on our experience!

Here are a couple of links from the Mayo site:
-Neurosurgery
-Pediatric Rehabilitation Program
-Cerebral Palsy

A Short Post-Rhizotomy Update

It has been a while since I last updated! We had a great weekend at home and enjoying being together! After 2 crazy busy weeks in the hospital and traveling, we needed some time to be home and do nothing! Of course, doing nothing still meant that on Sunday Nina got to have a birthday celebration because she is now 5 years old. She is very excited to be as old as her big sister Ellie (post and pictures to come).

The last two days we have been driving to Mayo every day since we have not been able to get a room at the Ronald McDonald house. They are full! Yesterday we were 12 on the list and we really hope we are getting closer to being the next named called on the list.

As far as the rhizotomy goes, Nina is really doing fantastic! The difference in only 2 weeks is absolutely incredible.

A few people have asked where the incision is done for a rhizotomy. For Nina, it was higher than we thought it would be. For some reason, Andy and I always thought that it would be close to her waist, you know, since she is primarily affected from her waist down. However, the incision was done mid-back.

And, here is a video of Nina moving and flexing her feet! Pretty exciting stuff happening in this little girl's legs and she knows it! She can sit like a pretzel so well and she is gaining more and more strength in her legs and core muscles (abdomen and back muscles).

Photos and Videos Post-Rhizotomy!

I know it has been a while since I promised this, but here are some photos and videos of Nina post-rhizotomy!

First, our sleeping beauty. Now that she moves better, she is all over the bed at night and she is sleeping so well!

 Grandpa and grandma Henely came to visit. This is when I decided I should take pictures of her visitors...and I have not taken any more! I remember as soon as friends walk out the door.

 Today, Nina's friend A came to visit! We have really missed her this week. She got to go home last Friday and it was exciting to see her for a little bit today. She is an adorable little girl and has the sweetest voice! Going to the play room is not the same, and we can't go looking for her if we are getting a little bored.

And finally, some videos from yesterday at therapy. you will see how well she is really doing with the bike and also her "march" as she walks. But do notice that her knee comes up as she takes a step!

Lastly, Nina's braces were adjusted today, and some of her straps were replaced. We are pretty excited about that!

Ten Days Post Rhizotomy

It is late, but I wanted to share a quick update on Nina and her progress since having her rhizotomy.

I will start by saying that there is no doubt that this was the best thing for Nina! It has only been 10 days, but even with the difference we see now, I am so pleased! And what amazes me is that we have so much more improvement to see for the next year all thanks to this procedure!

Today, I held Nina on my hip and I realized that she felt...normal. Before the surgery, when I held Nina on my hip, I had to wrestle her legs around my waist, and there was a constant pressure of her legs tight around me. Today, it was a different story.

Today, Nina got to try to use her walker. She needs help holding her weight, regardless, she is taking steps and there is actually movement! her legs are not glued at her knees with little tiny running steps on her toes. Her legs are actually stepping, one at a time. Right now it looks a lot like she was marching...but she could not march before, that range of motion was simply not there.

Today, Nina kicked  a ball! Awkwardly and badly but she tried, and her leg was swinging back and forth.

And she sleeps!

With just one finger I can push her foot up and down. With her left foot, she can even do it on her own, she can actually flex her foot on her own!

Botox was great for Nina, and we had seen great results, but this...this trumps Botox a hundred times over! And did I mention this is only the very beginning?

Six Days After Rhizotomy

This morning Nina was singing one of her Bible songs from Bullfrogs and Butterflies, "Be Strong and Courageous." And I paused a little thinking how strong and courageous Nina has been for the last week.

"You know Nina, you are strong and courageous"
"I am?"
"Yes, yes you are. You are teaching all of us what it looks like to be strong and courageous."
"Thanks mom, you teach me a lot too."

I had not seen Nina from Sunday night to Wednesday afternoon, and I was impressed at how well she is doing. She is doing incredibly well emotionally, but also physically. She is moving around, sitting on her own and crawling.

You see, after a rhizotomy, kids are weak. The spasticity is gone, and all of a sudden they need to re-learn how to sit, stand, and move. They say it takes about a year to regain the muscle strength from before the surgery. The difference is, the right muscles will actually be working! So while Nina could "run" with her walker, right now she can barely hold her weight.

I did not expect her to be doing as much as she is doing now. Andy and I were talking, and we are reminded that our little girl is a fighter. She was born at 27 weeks and has Cerebral Palsy. She grew up in an orphanage, but she was a fighter, and she continues to try so hard. I am not surprised at how well she is doing, but rather in awe of this little girl, who has gone through so much in life, yet stands assisted with a big smile on her face. She is indeed teaching me what it looks like to be strong and courageous. She is amazing. I feel so incredibly grateful that I get to be her mother. It is an honor to call her my own.

She is doing so well, that they are thinking she will be realeased next Friday! All along we thought we would be here for her birthday, and now we migt be able to have a party and celebrate at home! We will have to come and stay at the Ronald McDonald house for about a week or two, but that is better than the hospital and all 5 of us can stay together!

As for pain medication, Nina is basically only taking Tylenol 3 or 4 times a day and then a stronger pain medicine in the morning.

Nina is supposed to sleep wearing leg braces (that keep her legs straight) and she hates them! So that has not gone so well. Nina is a belly sleeper, so instead we will incorporate time during her day to wear these.

Today, as we were playing with Nina's friend, Nina pulled herself up to a stand and stood for about 10 minutes. I helped her with balance and positioning. She is phenomenal.

So Far So Good

Nina got to meet her little friend who had the same surgery the week before. Little A is there with her daddy, so the little girls get to play together while the daddy's hang out. Turned out pretty good that Andy is the one staying with Nina at the moment.

As you kind (kind of) see, Nina is dressed! The OT comes in every morning to help Nina get dressed, there is a lot if therapy that takes place while this happens. Sitting, standing, pulling, balancing, etc. And Nina has no clue that there is a lot more happening besides getting dressed!

So this morning Nina and A took a stroll together and decided to play the piano.

And for your enjoyment, here is their recital. You may clap at the end if you wish.



Rhizotomy Day 4 (post-op)

Nina had a pretty sleepless night last night. It sounds like she laid in bed quietly but was awake most of the night. She has to wear her leg braces and she seems pretty bothered by them. Andy finally took them off at night. She had a melt-down in the morning, so it is pretty obvious that mornings are hard. From resting to waking up, she is having some pain. Andy arranged so that she can get her extra pain meds first thing in the morning. Other than that she is just taking Tylenol.

Nina was moved to the rehab unit, and Andy says the room is pretty big. We will have our own refrigerator and you can make this room feel a little bit more "homey."

Andy and Nina explored the hospital today, so they were out and about in elevators, halls, and I believe they visited the peds floor play room again.

Unfortunately because of the timing of her move and the fact that she really needed a nap, Nina ended up having no therapy today. Andy tried to stretch her and put her leg braces on, but eventually she was crying insisting that they hurt. They came off with a fair warning, "This is the last time we take them off, you will have to wear them every night."

Andy did say it is fun to see Nina sitting up so well and seeing her feet lay flat on her foot rest on the wheelchair, something that did not happen before (only her toes would touch and with her braces on she did not quite get them down either)

I will update again tomorrow from the hospital when I get a chance as Andy and I are switching home duties.

Rhizotomy Day 3 (Post-Op)

This morning the neurologist came in early in the morning to check on Nina (who was still sleeping and was still sleeping by the time he left) He said that they were removing the epidural and catheter today and we would see if she was ready for the rehab unit on Monday. Then he cautioned me that for most kids, this was their hardest day. I was not sure weather to believe him or not since Nina had slept so well and we had finished the day pretty well.

At about 8:30 am the epidural guy was in the room ready to take it out. Nina was still sleeping, and it did not go so well to be woken up only to be moved around and having someone pull a needle from your back. This is when the crying began.

There was a lot of crying today. Everything hurt, but Nina was especially complaining about her tummy hurting. She finally fell back asleep sometime in the morning and took  a little nap until the OT came to see her and work with her for a little. We were back to crying. Nina did really well, she sat for about 15 minutes with little assistance. If you are reading and your kid had a SDR, you know how good this is! Of course, she cried during this time too.

After the OT left, Nina continued to cry. She was crying so hard she was hyperventilating, so I had to leave the room and ask one of the nurses to come. We could not get her to settle down and she kept saying her tummy hurt. I could tell she really was in pain, and they had just given her some pain meds when she threw up.

Andy and Ellie came shortly after that and Nina settled down a little bit. Nina is not eating or drinking, so that makes it tough. By then the PT came to work with Nina and stretch her. We need to get Nina moving, but she cries every time we move her saying her back hurts. However, she wanted to get out of the room so we got her in the wheelchair and we went to the play room. She did great! She actually sat there for about 30 minutes! We did have to prop her up a little bit, but it was sweet to see her playing with Ellie. But then she threw up again :(

She eventually was too tired and needed to lay down, so back to the room we went. PT came back to stretch her some more and put her braces back on. Nina let her do this for hour and a half! In which time the catheter came off and Nina used the potty! We realized the cath must have come off before and Nina had been holding it for a while (she had been telling us she had to go potty). Andy also got to learn hot to do the roll in order to sit Nina up. Pretty challenging when you cannot just pick up your child and move them from place to place.

Ellie and I came back home and Andy stayed with Nina at the hospital. They went back to the play room and were there for a while. All of this is so good for Nina!

It was a very stressful day from an emotional standpoint...for all of us! But we are encouraged seeing Nina's physical progress.

On a side note, Andy and I were surprised how well Nina has slept in the hospital. Then today I remembered what the PT had told me before the surgery, "Nina will be able to sleep better, and maybe even sleep all night long." I guess it was true for Nina, and we have always had problems with her waking up several times at night. For the first time in her life, Nina has been able to sleep all night long! Sleep is so important, and I am just so excited that thanks to this surgery she will be able to get better rest.

Thank you again for all your prayers! We really appreciate it!

Rhizotomy Post-Op Day 2

Let me begin by saying that I am amazed at how well Nina is doing, really incredibly well. The only pain she has complained about is the catheter and her hand (because she hates having the IV and the "red light" on). There have been some rough moments where she is over the top with her emotions and she gets a good cry. These moments come usually when she is very tired, or when there are too many people in the room checking her. These days, although have hard stressful moments, have really been better than we expected. We expected intense pain and muscle spasm, and we have thankfully not had to deal with that. We have been praying, and many of you have been praying with us, thank you. We know God is the one that is carrying us through.

The day did not begin as smoothly. I spent the night at the Ronald McDonald house and got to the hospital at 8:00 am. Nina had had a really great night, slept all night, and had been happy all morning. Then I showed up and she was not happy anymore. I think she wanted me to baby her, and she asked me to rub her legs. Let's just say she was not tolerating anyone touching her legs this morning, and we lost her quickly. I had to leave the room, because I was making her cry even more. I am not sure if she wanted me to hold her or if she was angry with me. When I came back she was settled down. Andy gets the best daddy award, he really does incredible in stressful situations like this.

She was fine for the rest of the day, but her legs were pulled close to her and she was "flopping" to the side quite a bit. At around 12:30 she was allowed to sit up more, and we had some discomfort with the new posture, but it did not last long. She was easily distracted by the arrival of balloons! Thank you friends!

We had been told the Physical Therapist was coming at 1:00 pm and we knew our dear friends were on the way with Ellie, so we did not have her take a nap. Ellie and the Heitz's got here and Nina was already very tired, so she was a little emotional, but still did pretty well. I think Nina was excited to see her big sister and Ellie is such a great big sister!

Nina got some precious cards from her pre-school friends, and we looked at them all. Her friends also took some pictures of them, laying on the floor spelling her Name. Those pictures and cards will be decorating her room!

Nina then had more visitors! And along with those visitors were some of Ellie's favorite friends. Nina was about to loose it at this time.

By the time the Physical Therapist came, it most have been at least 4:00 pm. Nina did really well, she got stretched for about an hours and she finally got her leg braces on, which we were told they were supposed to have been on since last night. We knew they were supposed to be, but we are also sure we were not supposed to be the ones to put them on. Nina tolerated those pretty well.

By dinner time Nina seemed pretty tired. Our friends offered to stay so that and Andy, Ellie and I could go out to eat and get Andy and I switched around for the night (him and Ellie get to sleep at Ronald McDonald's house, I am at the hospital). When we came back Nina was sleeping. We woke her up at around 8:00 and she had a great day until 10:00 when she went back to bed.

She really is a trooper!

Tonight, as we were getting ready for bed, Nina said, "I am wiggling my toes! Mom, the surgery is working, it is really working!" And I wish you could have seen her face.

Tomorrow we hope the epidural and catheter come out, and then we will start getting her up and moving. She is doing so well that there is really a great possibility of her going to the rehab unit on Monday. That is pretty incredible to me. It will be great to get her to have therapy as soon as possible. I am so anxious to see move again.

I am not being able to upload videos, but will as soon as I can!

And as she sleeps, Nina is holding her pillow pet "Fluffy" on her chest. Amazing what a pillow pet can do. You can see in the last picture that Fluffy was by Nina's feet to make her legs feel better even if she had to wear those braces.

Selective Dorsal Rhizotomy-Day 1

It has been a long day. I will do my best to give you a quick summary of our surgery day.

From a medical standpoint, the surgery was a success. They said we would see improvements immediately, and in a way, we have. With my thumb, I was able to push Nina's foot in order to get it to 90 degrees. Incredible! Absolutely incredible. The down side, is that her muscles and body are having a hard time figuring out what is going on. Connections that were there are now gone, and some other connections are finally being able to kick in. After flexing Nina's foot, it was followed with some light muscle spasms, which we have heard are the worse to deal with after the rhizotomy. The surgeon advised us not to push that too much (knowing of course we want to see and try the difference) he did say this could bring out the spasms. Her legs are really super sensitive.

Nina has an epidural for the pain of the surgery and those nerves, it is not in the same place as an epidural for pregnancies. It helps, but Nina has sensation in her legs. She hates the catheter, this has by far been the hardest thing to deal with.

Emotionally she is a mess. It is hard to come out of surgery and feel so not like yourself. She finally came out of recovery at 3:00 pm and we had some very intense hours where she was crying and crying. They increased her pain meds and we feel the pain is being controlled pretty well, emotionally this is another story.

Tonight some friends came to visit, and Nina did really well with them here. And when I told her it was time to go to bed, she just closed her eyes and fell asleep quickly.

So now it is time for me to go to bed. Andy will spend the night with her and I will go sleep. Tomorrow morning he will go take a long nap while I am with Nina.

They said tomorrow sometime in the afternoon they would get Nina up (she has had to lie flat all day, and she has not tried to get up, which is pretty amazing)

I will update here again as soon as I can.