Thursday, April 28, 2011

Nina in the News!

3 What are your thoughts?
Yesterday we had a TV station come and tape Nina during music therapy. She was being very shy, but she still did a great job. They taped for about one hour and a half and it all came down to a six minute segment. And I have to say, they really did a great job!

So just CLICK HERE and go watch her TV debut (on the right hand side).

Wednesday, April 27, 2011

Photos and Videos Post-Rhizotomy!

8 What are your thoughts?
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!

video

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

Monday, April 25, 2011

Ten Days Post Rhizotomy

4 What are your thoughts?
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?

Friday, April 22, 2011

Six Days After Rhizotomy

4 What are your thoughts?
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.






Tuesday, April 19, 2011

So Far So Good

4 What are your thoughts?
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.

 video

Monday, April 18, 2011

Rhizotomy Day 4 (post-op)

1 What are your thoughts?
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.

Sunday, April 17, 2011

Rhizotomy Day 3 (Post-Op)

0 What are your thoughts?
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!

Saturday, April 16, 2011

Rhizotomy Post-Op Day 2

4 What are your thoughts?
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.

Friday, April 15, 2011

Selective Dorsal Rhizotomy-Day 1

10 What are your thoughts?
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.

SDR Surgery Day

6 What are your thoughts?
 We were up early this morning, as we had to check in at 6:15 am at the hospital. Nina did really well in the car as she held her pillow pet close. It was a gift from a sweet friend of hers from preschool, and since getting the pillow pet she has decided maybe she should marry him. I think she is easy to please!

She is loving her new sparkly blue wheelchair, and wanted to sit in it instead of having us hold her. And, to make it even better, she got a Strawberry shortcake sticker and a Belle sticker.
 Her "hat" is also strawberry shortcake, she loved it!
 She got to be a marshmallow. It is a special blanket to keep her warm, as it was important for her to be warm before the surgery.
 They gave her some medicine that really puts you out of it, so she won't remember a lot of the actual procedure. She chose daddy to go in with her, but we got a picture done before hand.
Andy said she was out in no time. Prep-time took a little over an hour, and her incision was done at 9:18 am. Please pray for the hands of the surgeon and for the people caring for her.

We have a good friend with us as we wait, and we are so thankful for that.

I will update as soon as I can.

Thursday, April 14, 2011

Selective Dorzal Rhizotomy Part 2

3 What are your thoughts?
Tomorrow is the big day. Bright an early we will be going to the hospital and Nina will have a Selective Dorzal Rhizotomy.

Today was a day full of doctor appointments and to go over all the procedures that will be taking place.

First, we met with the Orthopedic surgeon and he went over the gait lab test results with us. We actually got to look at the charts and see what her body is doing. It was really interesting to see where she is at compared to typical children. We saw what we knew, that her left side is  a lot stronger than her right side, that her steps are really short, and that she walks really high on her toes. Actually, her heel cord is so spastic, that it did not even register on the charts...no wonder she has no balance and really there is no way she could have ever walked independently this way. She is not only high on her toes, she kind of even "bends over" them.

From the orthopedic standpoint, this rhizotomy will dramatically reduce the number of surgeries she would have had without it. After the rhizotomy, IF we need to lengthen her muscles or tendons, we might just need to do it once, without the rhizotomy, we could be looking at doing lengthening of the same muscles maybe up to 3 times (because of her severe spasticity). Her bone deformities will have to be addressed, but the rhizotomy will help postpone when this needs to happen.

We then met with the surgeon, and he explained with detail what is going to happen tomorrow. They will remove a small section of her vertebrate so that they can look at her nerves. They isolate the nerves and they test one by one. Every nerve has roots, and if they have to cut some roots in a nerve they do not cut them all, but up to 40-60% of the roots.

Nina's amazing, incredible, wonderful Physical Therapist will be in the OR during surgery. She knows Nina best and she is an incredibly caring person. Knowing that she will be there gives me great reassurance!

Following the surgery, Nina will have to lie on her back for 24 hours. Her head cannot be above the incision site in order to avoid spinal fluid to leak. She will be in so many pain meds and sedated, that we are praying that she will sleep most of the time! Now, I have never had an epidural, but she will have an epidural and catheter until Sunday.

We thought Nina would have to be in ICU for a couple of days, but that is not the case. She will be in the regular pediatric floor until she is ready to be moved to rehab. Best case scenario, she would be ready on Monday...we will be happy if this happens by Thursday. Either way, it is incredible that she will be up and moving by then...

Which brings me to the next part, because "up and moving" will not happen as easy as it sounds. We were told to expect Nina to be very weak. I heard that from other parents and now also from doctors. She will have to re-learn to do everything again. Sitting, standing, moving her legs. She has been able to do this mainly because of her high spasticity, once it is gone, her muscles will get to work properly for the first time. Just like babies take time to learn to do all these things, it will take time for Nina. Hence the intense physical therapy to follow.

And to finish the day, Nina got her very own wheelchair to keep! The one she got to chose a color for (sparkly blue) and the one that she will get to use for the next 5 years or so. Pretty exciting!

The picture bellow from St. Louis gives you an idea of what this surgery "looks like"


We appreciate your prayers as Nina goes into surgery. Please pray for the surgeon, pray for Nina, and pray for us. I have heard time and time again that parents have a harder time than the kids. I believe that!

Thank you for your wonderful words of encouragement and for all the support and prayers that you have given to us. We truly are thankful. It is so incredibly reassuring to know that Nina is going into this surgery covered in prayer.

I will update as soon as I can.

Tuesday, April 12, 2011

Three Days Before Rhizotomy

9 What are your thoughts?
We are counting down the days before Nina goes in to have her surgery. In 3 days, Andy and I will be handing Nina over to a skilled surgeon who will open up her spine and find the nerves that are not working properly, cut them, and therefore reduce her spasticity. Thinking about it makes me dizzy, it is quite the surgery, and it is quite the recovery time.

Currently Nina is taking a drug called Gabapentin. You can follow the link and read all about it if you want, but basically, she is taking it for "pain management" due to the surgery. We are thankful for this drug, since I know that the hardest part of the rhizotomies are the following 2 days. This medicine is going to help. But it has been really hard too:

"If you are giving gabapentin to your child, you should know that your child's behavior and mental abilities may change while he or she is taking gabapentin. Your child may have sudden changes in mood, become hostile or hyperactive, have difficulty concentrating or paying attention, or be drowsy or clumsy."

Nina has been an emotional mess. She is crying all the time, and recently even multiple times at night, which is pretty frustrating because all 3 of my girls share a room. She seems withdrawn, and to be honest, this is very difficult. Why? Because we are seeing the "orphan" Nina that we had not seen for about a year. Her behaviors and emotional state are pretty tough. I keep reminding myself that it is not her, it is the medicine. After the surgery, she will be done with it and we will get Nina back! So if you think about us, please pray for this particular issue.

We would also appreciate prayer for Nina while we are at the hospital. Emotionally, even without this medicine, institutionalized places are hard for her. She really dislikes hospitals. We are going to be at a hospital for a really long time. Pray that this experience will not bring back her fears associated with the orphanage and her medical interventions done in Ukraine. Pray that she feels encouraged, cared for, and we will have Andy, myself, or my mom with her at all times.

On a positive note. There is another little girl getting a rhizotomy at the same time as Nina. This little girl was adopted from Ukraine the same year, has the same type of CP Nina has, and they are the same age. Pretty sweet! I think it will be great for them to have each other and maybe even do some therapy together!

What a week this will be! Nina's last day of school is tomorrow. Andy's last day at Bethany Alliance is tomorrow, my last day with some amazing teenagers in my small group is tomorrow, and then it is all surgery from there.

We appreciate all your support and covet your prayers!

And as a side note, I will be back on facebook to keep everyone updated on Nina's surgery and progress. Stay tuned, because this blog will also have lots of photos and video.

You Can Help!

0 What are your thoughts?
See this precious little girl? This is Tasha 31 (Ember) and her forever family is getting ready to go get her and bring her home.

Let me tell you a little bit about her family.

The Senti's were a happy family with 3 boys. Then Lorene got pregnant again, and finally a little girl joined their family.  A little girl with an extra chromosome, a precious baby with Down syndrome. And a baby that changed their lives and hearts forever.

Last year I shared some pictures with you of a Down syndrome get together we had in St. Louis. This is where I met Lorene and her daughter.

Shortly after that, Lorene sent me an e-mail asking about what it was like to adopt a child with mobility issues, because like our family, the Senti's were feeling moved to adopt another child with special needs, and they had fallen in love with Tasha 31 (who they will name Ember). Tasha has arthrogryposis.

This is what is happening, most likely the Senti's will be given a travel date in the next couple of months (or weeks!) and they need our help! In order to raise the funds that they still need for their adoption, they are having an awesome give-away! They are giving an iPad2! For every $25 donation your name will be entered once, give $100 and you will be entered 5 times.

If you can't give $25 right now, give what you can. I remember when we were adopting we would get donations of $1, $2, $5 and I knew that someone out there gave either as much as they could or they thought they could spare a couple of bucks. And that little bit added up made a BIG difference!


CLICK HERE to give and get a chance to win an iPad2.

And prayers for the Senti family are always appreciated too!



Saturday, April 9, 2011

31 Days of Drawing Near to God by Ruth Myers

0 What are your thoughts?
Ruth Myers knows what it is like to rest securely in His delight. In this short devotional book, Ruth Myers shares with us instances in her life where her personal and intimate love relationship with God carried her through. She finishes each chapter with a prayer, and suggested Bible reading for the day.


I really enjoyed this book and it was an easy read. For every chapter, Ruth shares about a particular time in her life where a specific aspect of God’s love helped her face the days ahead. I found her personal story fascinating and a real testimony to what she was “preaching.” She is a woman that knows the grief of losing a husband and holding on to God as the source of all she needs. Her life and struggles as a missionary are touching as she shares the deep love of Christ as it sustained her during those moments when she could have chosen to turn back.

I am not one to read devotional books, but this is one that I would recommend and one that I enjoyed.

You can click here to read the first chapter of the book.

I received this book for free by Waterbrook Multnomah in exchanged for my honest review.

A Conversation with God for Women by Marcia Ford

0 What are your thoughts?
If You Could Ask God Any Question, What Would It Be? In her book, A Conversation With God for Women, Marcia Ford addresses questions such as:


“If you love us, why do we suffer?”

“What is your purpose for me, here and now?”

“How can the Bible still be relevant?”

“How can anybody find good in tragedy?”

The questions presented in this book are real. They are the sort of questions that many of us have asked at some point or another as the storms of life and the questioning of uncertainty attack us. Some of these questions have come to us from places of deep pain, from places of grief and loss, and sometimes even places of selfishness.

For each question there is an answer from Jesus, an answer from God, and in many of the questions, there is an answer from a woman in the Bible.

I was captivated by the title of the book, because in all honesty, I dream of a day where I get to sit with God or Jesus over a cup of coffee and talk about life. During our conversation, I am sure some these questions would come up.

However, I did receive this book for free by booksneeze.com in exchange for my honest review.

When I picture a conversation with God, I picture dialogue, understanding, and connection. The writing was strong, and the Biblical and Theological foundations of the answers to the questions were also strong… but there was little conversation. I felt like there were 55 questions with short little sermons to follow. The book spoke to my intellect but not to my heart. I did not feel like I was changed or challenged after reading the book and I am positive that if I were to have a conversation with God, I would be forever changed. Ford’s “voice” for God and Jesus were weak for me, I heard her voice as if she was God and Jesus, but I had a hard time seeing God or Jesus responding in such an impersonal, matter-of-fact way.

I would recommend this book to someone that was an analytical thinker; someone that needs the facts aside from emotion. This is actually a great book for logical thinkers, as the content and writing are strong. However, I like to read what connects with my heart, something that moves me into a deeper relationship with Jesus and something that challenges my way of living. Therefore, if you are more like me, you might struggle to read through this book.

I received this book for free from booksneeze.com in exchange for my honest review.

Wednesday, April 6, 2011

Gait Lab Results and Rhizotomy Goals

4 What are your thoughts?
Last week we received the "official" written documents from Nina's gait lab analysis and from the last appointment where we spoke extensively about Nina's Selective Dorsal Rhizotomy.

"The gait lab study shows significant abnormalities affecting Nina's walking. These include the following:
  1. Static encephalopathy, spastic diplegia
  2. Bilateral lower extremity dynamic spasticity
  3. Bilateral hamstring contractures
  4. Bilateral gastrocnemius contractures
  5. Bilateral rectus femoris spasticity
  6. Bilateral hip adduction contractures
  7. Bilateral internal femoral torsion, worse on the left
The treatment recommended by the gait lab staff and our review is a selective dorsal rhizotomy."

And here is the section from the physical therapist.

"Goals/outcomes (to be met 6-8 weeks after rhizotomy)
  1. Nina will stand for 15 seconds independently without upper extremity support.
  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.
  3. Nina will sit in tailor sitting position for 10-15 seconds independently.
  4. Nina will have 10-15 degree increase in her lower extremity range of motion."
Those goals sound pretty exciting to me! So many things that we took for granted with Ellie and Nichole. Sure, Nichole took and still takes little longer to do these things, but it is not a matter of IF she will do it, as much as WHEN. With Nina, these small accomplishments are incredible! Standing independently for 15 seconds! Wow, I will tell you those 15 seconds will make me cry with joy!

And just in case you wonder what "tailor sitting" is, it is basically sitting with your legs crossed in front of you, or with your heels touching. Basically, how most children sit when they are playing.

Tuesday, April 5, 2011

Stretching Nina's Muscles: Fighting Cerebral Palsy

2 What are your thoughts?
Imagine I ask you to tighten all the muscles in your legs, every single one of them. As tight as you can get those muscles to contract. Hold them that way for an entire minute! Now that you did it for a minute, why not 5 minutes? Let's try an hour, can you imagine doing that for 60 minutes? Now what about doing that for let's say...5 years? Even while you are sleeping?

This has been Nina's life, a constant tightening of her muscles, especially in her legs. Her muscles are so tight all the time that it is very very important that we stretch her muscles. Stretching goes against everything her body does most of the day. Stretching makes her muscles do something that goes against their natural way of being in Nina's body. Stretching hurts. But it is important. We need to get her muscles to stretch and elongate.

We stretch Nina at least once a day. Some days, getting that one time is a challenge in our busy days. On a  good day, we do this 3 times a day and we do our sets of stretches 2-3 times around.

You will see in the video that Nina is not liking it very much. We only did it once around. Our camera sound is terrible, but she began to cry at some point but stopped as we try to distract her. At times you will see she is pushing against my knee with her hand trying to get me away. She contracts even more and sometimes her fighting makes the stretch more difficult and more painful. You will also notice that I use all my strength to push on those muscles, it is a workout for my arms to stretch Nina for sure!

We are also adding some of the muscle exercises post-rhizotomy. We have her do "bridges" "alligators" and kicks. Her kicking is not a kick (as she cannot straighten her leg!)

And I will be excited to show a video post-rhizotomy to show you the difference in her muscle tightness.

Edited to add: For the sake of the video, we did all of Nina's stretches quickly. We hold the stretches for a while, (we sing ABC's or count in English and then Spanish all the way to 10 while saying it slowly) It is painful for Nina to stretch, so she usually cries during her stretches, and it takes us about 20 minutes per stretching session. Here, you get our "routine" in 3 minutes.

Monday, April 4, 2011

Update and Prayer Request for Our Family

5 What are your thoughts?
At the end of this year, Andy and I will look back at the big changes of 2011. For starters, it is the year we both turn 30, but that is a small change, maybe insignificant, other than the fact that it is the big 30!


Mostly, this will be a year of big and significant changes.

On April 13th Andy will say goodbye to Bethany Alliance Church. It has been a long process, but God has been transitioning Andy out of youth ministry for the last few years.

Eight years ago, Andy and I got married. We were only 22, almost done with College. A few months after getting married we graduated and Bethany Alliance Church invited us to come; we were just kids. It was here that we “grew up” and became adults. It was here that we had our three daughters, and the place where we have created family. What a beautiful place this has been, and how dearly we love the people here. Our life together as a couple and as a family has been in this small town, with these incredible people. To think about leaving breaks my heart, and although it is cliché, part of me will truly stay back here. Our daughters are losing grandparents, and although they are not blood related, they will always be family. I don’t like to think about leaving, because I am not able to hold back the tears.

But there is this small church in Wisconsin, with only about 40 people. They needed a pastor. A pastor that could carry a tune, maybe play an instrument and lead them in worship. And someone that was comfortable with disability and special needs. While we know that it will be hard, we are so excited to be a part of Orchard View Alliance Church. There are wonderful people with big hearts in this church, and we are so excited to create a new family with them. We are excited to see God move! Andy will become the Senior pastor of Orchard View on June 1st.

Between this transition, Nina will be having a Rhizotomy done. This is a very intense surgery and the rehab is quite demanding. Nina will be living in the rehab center anywhere from 3 to 5 weeks. Yes, it means most likely Nina will go from Mayo clinic to a new house in Wisconisn.

During this time, Andy and I will be splitting our time with the girls. One of us will be with Nina, and one of us will be with Ellie and Nichole at home, packing our house so that we can move. We know this will be a hard time for our family, but the love and support that we have received from our church here is incredible! We know they will walk with us, they will support us, and help us carry the load. They have loved us so well these last 8 years, and they continue to do so. Again, it will be so hard to say goodbye.

So this is where we would appreciate your prayers.

For Nina’s surgery

- We know that it is a painful 2 days following surgery. For some kids, intense pain, others just sleep it off. Please pray that Nina can handle the pain.

- For Andy and I as we watch Nina having to go through this. The surgery will help her so much, but it still does not make it easy.

- For the surgeon performing Nina’s surgery.

- For Ellie and Nichole back home, this will be hard for them too.

- For our family as we spend so much time apart from each other.

For our transition

- Please pray that we sell our house. This is a big prayer request!

- We need to find a place to live before we move (and ideally we will only have one mortgage).

- For the people of Orchard View Alliance as they wait without a pastor. This has been a transition for them too.

- For our girls as they move to a new town and make new friends.

- For us, because we need new friends too.

The Road to Acceptance- By Cary from "About the Small Stuff"

2 What are your thoughts?
Today I want you to meet my friend Cary. Cary has two adorable twin boys, Ben and Daniel. Ben has Cerebral Palsy, the same type that Nina has. I first found Cary's blog as I searched for other blogs writen by mom's of children with CP. I began e-maiing with Cary and asking her many questions about CP and what worked with Ben and what didn't. Although Cary helped me much in that area, I never expected that her friendship would push me to deal with Nina's diagnosis. Because even when you knowingly adopt a child with special needs, you still have to grieve their diagnosis at some point. And Cary was someone that God used to open my eyes and my heart.

For this reason, I asked Cary to write a post about dealing with the diagnosis of Cerebal Palsy. Enjoy her words!


The Road to Acceptance

I never really believed that I would get to this point.  I think back to those first months after hearing those fateful words…the words that made me feel like our family would never be the same again.  The words that I still hear sometimes…”you know Ben has CP?”  I remember reading blogs by Moms who had older children with CP.  They would write about the joys in their life.  About how they had stopped crying.  About how much they were enjoying life and their child.  And I thought that they were lying to the world or that they were so deep in denial that they were never going to get back out.

But you know what?  I’m one of those Moms now.  Two and a half years later, I’m writing similar things.  And feeling similar things.  Truly.  And no, I’m not lying and I firmly believe that I’m not in denial either.

But it was a long road to here.  A road filled with many, many evenings of Google searches and heart-wrenching sobs as I thought of our future.  Of Ben’s future.  Of Daniel’s future.  Yes, Daniel’s future.  I mourned the “normal” twin brother that he wouldn’t have.  The brother who wouldn’t be able to climb trees and ride a bike and play football with him.

There were fights with my husband when I didn’t see him doing endless Google searches too and trying to find out just about every single thing about CP.  I didn’t understand why he didn’t feel the overwhelming need to know.  While he sat there wondering why I was putting myself through such agony every single night after Ben went to bed.

And there was jealousy.  So much jealousy.  Not of regular families with regular kids.  But of families with regular twins.  Seeing twin boys running around and playing together was like putting a knife through my heart.  It was the death of all my dreams.  My dreams of a life with twins.

But slowly, ever so slowly, I started looking up from my computer screen and looked at my son.  My Ben.  My perfect Ben.  I could never cry or feel sad when I saw him.  He is so joyful.  So happy.  You should hear this boy’s laugh.  There is nothing in the world quite like his laugh.

And I started coping with this hand we had been dealt.  And yes, in some ways that I’m not particularly proud of.  I started looking around and saw how good we really have it.  And yes, this meant reading lots more blogs by Moms of children with special needs and comparing situations.  That may sound horrible, but I believe we all do this at some point.  We need to… in order to see that life isn’t quite as horrible as we thought it was.  And I began to see Ben for what he COULD do and not what he COULDN’T do. 

I started to feel gratitude.  Real gratitude that we had been given so much.  Gorgeous and healthy twin boys.  Yes, one can’t walk, but how important is that when you consider all that he can do?  He talks.  And laughs.  And eats with his own hands and mouth.  And breathes all on his own.  And with help, he can walk.  And run.  And jump.  And even ride a bike. 

And then, after many, many months, I decided to change my mindset.  I decided to stop thinking that something “happened” to Ben.  This may seem silly to some of you.  But for me, this was the biggest thing that I did in order to come to peace with this diagnosis of CP.   For so long, I kept thinking about what “happened”.  When did it “happen”?  Before birth?  During birth?  After birth when he was on a ventilator for 4 days after his lungs collapsed?  Was any of it my fault?  Was it the doctor’s fault?  Why did this happen to us? 

So when I stop thinking that it was something that “happened” to him.  And that this was just how Ben is.  That I found real peace.  Because Ben is wonderful.  And perfect.  And mine.  Thank the universe that he is mine.  No one else gets to experience that joy that is being his Mom, but me.  And I’m the luckiest mom on the planet.


Sunday, April 3, 2011

Eli project- Oprhan Hosting Program 2011

0 What are your thoughts?

Friends, here is a wonderful opportunity for your family to make a difference in the life of an orphan. Eli Project is seeking to find host families for children from June 8-22.

"Hosting an orphan from Ukraine is a wonderful opportunity for an orphan to “live” in a loving family environment and experience things they don’t know exist. A few weeks can change a child for a lifetime. These children sleep, eat, go to school and live at the orphanage all the time. They live in community with other kids–never having a concept of what a loving family is and therefore have no hope of experiencing it when they grow up. YOUR family could make the difference for the future of one of these precious children."

To find out more, just click HERE.

I love that Eli project is also reaching out to orphans with special needs, and they are being able to participate in hosting programs. And, they are coming from Ukraine, the same beautiful country that our Nina is from.

A few days ago, I shared my heart for orphans. If you have ever felt moved, but are not sure about adoption, this is a wonderful way to be involved and make a difference. Be a part of something bigger!

Friday, April 1, 2011

She Said YES- One Less Orphan in This World!

3 What are your thoughts?
Yesterday I shared with you my heart about the million orphans of this world. And I shared with you about the Davis family, who was denied adoption of their son because he has Down syndrome. I asked you to pray for the Hook family who was facing the same judge, and the Moreno family who will soon be facing the same judge.

Today, with great joy I want to introduce you to Evan Hook. The judge said YES! God is moving, He is answering our prayers!


Please continue to pray for the Davis family as this judge has the document with the appeal on her desk. It would be as easy as her picking it up and changing her answer. She can be a yes.

And continue to pray for the Moreno family, as they are the next family to come and petition this judge for the adoption of their sweet baby J.

We are witnessing a miracle, as stereotypes are being challenged, as a judge's heart is being changed! Pray for the judge too, because God could use this woman to become a strong advocate for adoption of children with special needs.

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