November 30, 2010

blood tests

I thought I would quick update for you on our current pregnancy. So far all is looking very well. We had two early ultrasounds and one a few weeks ago along with a blood test. The ultrasound combined with the blood test determined that this baby does not have downs syndrome or trisomy 18. We did not know that being 'high risk' meant that we were flagged for everything but, good information none the less. So, we said, well that is wonderful, but how about spina bifida? We had another blood test at 15 weeks. We had to wait till 15 weeks to hear results about SB because at this point there would be extra or more blood present in the babies liver. This comes from blood being in the amniotic fluid from the opening in the babies spine. Those test results just came back and we are now looking at a 0.116% chance of this baby having spina bifida (1 in 860)! Our next ultrasound will be at 21 weeks on the 27th of December. Thanks for checking in on us.

November 2, 2010

Pretty Princesses

Our big girl walking on the sidewalk! it is amazing how well she does with that dress on. (:

The 3 princesses with our honorary sister and neighbor, Angela.

Parallel Bars! Here is Whitney with the two men who graciously gave of their time and talents to give a gift to Whitney.

October 30, 2010


Hello all!
I tried to give you a few pictures to fill in the last few months of our lives here. They range from our family vacation to a cottage on Lake Michigan to the first day of school. We are doing very well over here and have MUCH to tell you.

First of all we are expecting baby #3! Yes, yes we are. All four of us are very excited about this. The girls are hoping for a girl and Matt is hoping for a boy to join him. (: Above all these requests is a prayer for health. How our perspective has changed over the years. We no longer take health of a baby for granted and pray frequently and fervently for this. With this announcement comes many questions from people and I will try to answer the most common so far.

1. What are the chances this baby will have spina bifida? Just like Whitney, it should be 1/1000. We have been taking all precautions the doctors have advised.

2. When does the spine form? In the first 10 weeks. So, we are at 12 weeks and the spine has formed. However, we still ask for your prayers for the health of this little one.

3. If you have one child with spina bifida could you have another? Yes. But all of the families with a child who has spina bifida that we know have had additional children without spina bifida. We could be the exception, but we hope not!

4. How am I feeling? Tired but great.

5. Are we anxious? No. Months ago we had to work through the possibility of having another child with spina bifida. This is where the trust title comes in. Personally, I, Susan, had to work through this process a little more. I had to ask myself hard questions. Did I still trust God? Do I trust Him again? What if God gave us another baby with a disability? And how would I respond? This took me several months of soul searching and I still get emotional thinking of these questions. The conclusions I came to drove my fear away. Here are a few truths that speak to my heart:

Isaiah 26:4 "Trust in the LORD forever, for the LORD, the LORD, is the Rock eternal."

Psalm 112:7 "He will have no fear of bad news; his heart is steadfast, trusting in the LORD."

Proverbs 3:5-6 "Trust in the LORD with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight."

Here are a few updates on the family:
Fiona started pre-school this fall and is loving it. She goes two mornings a week and is happy to fill us in with every detail of the days events. She attends Bible study with me two other mornings and still has one special morning alone with me.

Whitney comes with Fiona and I to Bible study one day a week and attends the Conductive Learning Center four mornings a week. She is learning, growing, and gaining strength. The biggest news is that she has taken her first steps with her walker! She is now able to walk across a room and as of this past Thursday can now step AND pull the walker with her. It is simply amazing. I have to say I doubted that I would ever see this day. When you are in the situation it is very slow but looking back is so exciting. She has continued to maintain her great attitude and works very hard. She is very proud of her recent accomplishments and asks to walk throughout the day. God has blessed her greatly with her wonderful disposition. She is the enthusiastic one around here.

With both girls in school I am now blessed with 4 hours 'free' a week! It is fantastic and knowing that this will be a fleeting time I am cherishing each moment. (:

Matt is doing great. He is still loving his work and has been having fun keeping up on all of the upcoming elections. He is such a fantastic dad and husband. All three of us girls feel very blessed over here in the Nelson house.

This coming Friday we have an ultrasound scheduled at the specialist office. They will be looking the baby over from head to toe. The ultrasound as well as the quad test should give us a pretty good idea of how the baby is doing. I will keep you posted on the results.

Thanks for thinking and praying along side us.

July 26, 2010

Oh, July

July has come and almost gone. We have had a full month. The first week of the month we had Spina Bifida Camp at The Conductive Learning Center. Whitney had a great week. She loves her conductors and her friends and was very much looking forward to going each morning. We did not have any new things happen developmentally but it was a great mid-summer reminder for her.

We have also been going to Physical Therapy (PT) this summer for 2- 1 hour sessions a week. I have learned that the key to whatever therapy you choose is the therapist. Thankfully we have 2 great PT's that work with her. It has been interesting to get a fresh perspective on Whitney to hear what they think her needs are.

The second week of the month we entertained and had play group after play group. The following week we were down with a summer virus just in time to bounce back for the last week of July. Whew!

We also saw the urologist. Whitney's kidneys are looking good. They have not grown too much in the last six months but he was not concerned. I am very passionate about Whitney's bowel and bladder so I was little nervous for this appointment and what he might recommend. I spend at least an hour of each day working on this with Whitney. It is an investment. (: I know, I am crazy, but at least I have a remodeled bathroom to sit in! All this to explain why this appointment made my month. He complimented me on our progress and success! I do not remember his exact words but he said he was impressed and that we are much further along on this road than most and further than he would have anticipated. I felt like I just received a job promotion with an outstanding review and bonus. It was fantastic!

Whitney start swim lessons next month!

June 23, 2010

Days of Summer

Our days of summer have been filled already with ice cream, play dates, coffee, doctor appointments, the kiddie pool, vacation Bible school, bikes, friends, and snuggling. We certainly can not complain. One highlight already is washing dishes. Yes, washing dishes. Since there is no dishwasher besides myself, it is a household chore that is not my favorite. Fiona loves to 'help' but as Whitney has grown and become more aware she feels left out so I try to wash them while they are playing or napping. I have been brainstorming for several months how I can involve Whitney and make it fun for all of us. I have even had a few ideas that were not taking safety into consideration. Needless to say mommy was quite excited about finding a solution.

A little health update on all of us. Matt is great. (; Fiona had her first successful dentist experience. She opened her mouth the whole time even when it was not necessary (super cute). Whitney had a clinic appointment where we spend the day in a office and several doctors flow in and out visiting us. This is an appointment where I always feel a little anxiety going into because you are never sure what information you will leave with. They were all very pleased with Whitney's progress and I would even say a little impressed. They did suggest that she does not have any more x-rays unless absolutely necessary since she has had so many but they did not fully answer my question as to why. They also think that since Whitney has learned so much in the last few months that we are at a pivotal point in her growth and they want her to have physical therapy 2x a week for 12 weeks. This should bring us to the start of the school year for The Conductive Learning Center. Last appointment we were told that she looks like she may be an L2. I do not think I even told you because I was so disappointed. Now they say L5! These letters and numbers translate into what function she may or may not have in her life. I think I have finally learned the lesson that I am not going to let the definition of what level define her or me. We will just have to wait and see what mighty work God does in her life. My back is doing fairly well. I am still seeing the chiropractor on a regular basis and as long as I do not hold Whitney for very long I am okay. I think I better sign up for another 5K to try to stay strong. (I am telling you this to keep me accountable, so feel free.) Here are a few more pictures for you:

Grandmas come for a visit.

I know, Whitney is on the potty but I love this picture! This is a great example of Fiona helping her sister without any prompting. She is helping Whitney take off her AFO's and I have been so proud of her stepping up to help in so many situations. We were at a play area today and Whitney was crawling around and a little boy was pushing her arm a few times. I was watching and waiting to see how she would respond. Fiona stepped in and put herself between to two of them and then pointed me out to the boy and his mom saying, "That is my mommy." I must look pretty intimidating or something. (: It was great.
Thank you for checking up on us!

June 1, 2010

Happy Birthday Fiona and many more

Time has flown by and we now have a 4 year old! These past 6 weeks have flown by as well so I have much to update you on.

Fiona's birthday was so fun watching her genuine excitement for everything. I was reminded of that child like awe of not being able to believe that you are a year older overnight. It is so precious. Fiona is a light in our life and we are so thankful for her and the special role she plays as Whitney's older sister.

Here are a few things to know about Fiona:
She has been picking up after me since she could walk.
She can not wait to ride in a school bus.
She tells me when I am not driving in the right direction and is usually right.
She has always been very observant noticing when I am not having the best day and when I wear a new shirt.
Her laugh is very contagious.
She is Whitney's greatest encourager and fan.

Whitney had her 6 week follow up appointment this past week. Her hip looks great! She said she does not need to see us for 6 months! Fabulous news. I feel as though a load of worry has been lifted.

Remember how we were a little concerned about Whitney's speech. Well, she decided to go to full sentences. Her first sentence was, "My baby's dress." Now she is reciting her prayer before meals.

Physically she began to 4-point crawl across rooms. She can now go quite a distance and is loving her new freedom. She began training on a walker a few months ago and is now able to do up to 5 steps unassisted with the walker. We are developing by leaps and bounds lately. This is our last week of Conductive Learning Center for the school year and I think we will all miss our new friends. Fiona and I have been pleasantly surprised to find great friends through CLC. Fiona now can play 'my legs do not work and I need AFO's' with other children who understand what she is playing. They help each other 'walk' and crawl. I have also found a support network of great women. These are just a few of the surprising blessings we have encountered.

Good news is that our house is officially done! Several months later after thousands of dollars of water damage the work is completed. This means no more strange men roaming about, uninterrupted nap time, and a remodeled home.

This past week we needed to move out of our home for the refinishing of our hard wood floors. There was much to move in preparation for this job so, after much lifting and continual lifting of Whitney my back decided that she had enough. I spent almost 5 days in bed... We are all still here with a humbled and sore mama. I am under orders not to lift Whitney so I am forced to be creative. Please pray for a quick recovery and a good attitude.

I almost forgot to tell you about the race! It went great. Thank you all for supporting me and Whitney's school. It has felt wonderful to be running again and working towards a goal. Thank you for the encouragement and hopefully I will be on the road again soon getting ready for another 5K.

April 22, 2010


My dear friend encouraged me to invite you to join me in sponsoring Whitney's school. On Saturday, May 8th, 2010 , I will be running to support the Conductive Learning Center in the Fifth Third River Bank Run. I have not been running for a few years so this has been a fun event to prepare for, and the girls are loving the jogging stroller. Whitney works so hard just to stand I figure I have no excuse not to run for her. Here is the website for you. Just mention Whitney or Susan Nelson.

April 13, 2010



Two peas in a pod: Fiona sings while Whitney claps.

Yes, I am standing by myself and I am NOT moving!

I have way too much to update you on so I will try to keep it brief. Let me first tell you about our doctor appointment today. We had Whitney's hip x rayed after the last 6 months of 12 hour bracing. 6 months ago her left hip was about 50% behind developmentally from the right. Today? They are the same! You might say, amazing, but I say what a miracle! I have to admit that I am shocked. The girls and I pray so often for Whitney's hip to be protected, grow, and heal. So, on the way home I explained to them what just happened. I told them that God healed Whitney's hip and Fiona said, "The Lord God Almighty?" I told her that was exactly right with a huge smile on my face. We will have the next 6 weeks brace free and then go in to check how it is responding.

A therapy update for you:
1. Three weeks ago Whitney took 5 consecutive 4-point crawling movements! She has done so many times since. This is proof of how much strength she is gaining over time.

2. Two weeks ago she began to lift her feet off the ground in a walking motion with the walker! She has someone behind her helping to support her hips at all times during therapy but she is now actively moving them on her own where before we always had to make the motion for her.

This past week was spring break from The Conductive Learning Center. Many times over the week Whitney yelled, "Me WALK!" She wanted me to support her body so she could 'walk'. I did indulge her as it was a request I could not deny no matter how rude it was presented. (: This past week we did take a few days to visit Chicago. We visited the Shedd Aquarium, the Smucker family, the Malhowski family, and my brother Michael's family. It was a joy to see all of you!

March 24, 2010

A Few Things

Today we had Whitney's 2 year well child visit. Here are her current stats:

weight: 27 lbs and 4 oz (60th %)
height: 34 3/4 inches (80th %) -not a surprise
head circumference: 45 1/2cm (10th %) - she has always had a smaller head

All went well. I did inquire about her speech. We had a doctor recently comment on his concern of a speech delay. She thankfully disagrees and told me that if it makes me feel better to write down all of the words she says over a three day period. She should be up to 50-60 words. I may just very well do that so I can stop worrying about it.

We recently had an appointment to get new AFO"s for Whitney. I am very excited and hope that this will help give her a little more support for standing. The orthotist also added a new observation. She has Genu Valgum. What is that you ask. (: Well, when we put her legs together her thighs touch to the knee and then below her knee her legs fan out. We will gradually try to correct this as overtime it could damage her knees.

With new AFO's comes new shoes! This has been interesting as with orthotics you need at least one size larger and as wide as you can find. It is trial and error and pretty frustrating for me as I would like her to have cute shoes. So, I went out and bought six pairs! We will find out on Monday what the results are.

A little update on our house situation: The re-construction began this week and it has been a relief to move forward. In the end we will have almost the whole house repainted, both bathrooms will have new tile floors, hardwood will all be refinished, updated plumbing, and the girls room transformed to pink. We have many weeks to go but I am already looking forward to the end result.

Enjoy spring!

February 24, 2010

Pictures and news

Whitney was on the news this morning! WOOD TV8 did a special for Conductive Education Awareness Day tomorrow. Click here to watch the short news clip.

I love to stand.

"Baby, walk, walk"

First snowman

My birthday is SO exciting!

Here is my Amtryke (a hand crank tricycle)

February 22, 2010


Today I went to pick up Whitney. The parents wait outside the classroom while someone helps the child walk, in whatever modified way they need, to the door. This gives all of the kids motivation to 'walk'. Whitney always uses a little chair or stool and walks backward, because her knees collapse, with someone helping shift her weight. Today she was trying out a walker! So, here she is, with someone helping her shift her weight, with a little walker! We were all very excited. Whitney began to wave to us and almost lost her balance but it was super cute. She was so proud of herself, which was a delight to see. She clapped for herself when she overheard me tell Matt and grandma.

We are moving up to 4 mornings a week for the last 3 sessions/months of the school year. She seems to be doing very well, so I hope the transition to 3-4 mornings will be smooth. This will enable us to keep her in BSF on Wednesdays as well.

The Nelson family has had to relocate to a hotel this past week. I walked in the house after Bible study on Wednesday to a flooded home. A PVC pipe broke in our upstairs bathroom and as Fiona said, "It is raining in my bedroom!". We hope to move back in tomorrow to a dry home and stay there while they re-do everything. It is going to be an interesting 6 week process. If you think of us please pray for patience, a positive attitude, and that we will be able to extend grace to those working on our home.

February 15, 2010

Forgetting the 'normal' things

Last night Whitney woke up screaming three times between 8 & 10. Now that she is two I can ask her where it is owie, knowing she may not be reliable. The first time she pointed to her shoulder, so I kissed her shoulder, snuggled with her and put her back down. The next two times she touched her shunt track which is about two inches above her ear. Naturally, this caused us to be concerned. We called the neurosurgeon and he said to go with our intuition and look for secondary signs. So, all night I kept her under close supervision hoping that it was an ear infection. I brought her in this morning and my hope was confirmed. Matt and I had to laugh that we hope for things like ear infections. It is quite funny.

Whitney did not got to Conductive Learning Center today but I did want to tell you all that last week she did great. I do not think she cried at all! It is hard for me to keep you as up to date on her progress this month since I am not there. I usually get a quick update when I pick her up but that is all. I have to admit that I have felt a loss of control not knowing exactly what it going on and Matt quickly confirmed for me that I have lost control. So, I think it is a good thing, although I would love to be a fly on the wall, that is for sure. (: I will keep you posted as I notice changes at home or when I get her report at the end of the month.

February 5, 2010

Birthday, Family, & Independence

First of all a belated happy birthday to my favorite, Matt. (: I am so thankful for my husband. I could not ask for a better man by my side.

We have been pretty busy with our family in the last few weeks. We were able to see a few of our Indiana nephews play high school basketball and stay the weekend with them. (Thanks for the great hospitality Michael & Becky!) The following weekend we celebrated Matt's birthday. This weekend we are living with my other brothers children for five days. I have come to the conclusion that it would be very difficult to have a family that spans 13 years. Toddlers and teenagers are a hard mix. (:

Thirdly, is Whitney's independence. Whitney started going to the Conductive Leaning Center on her own this week! That means I drop off my little two year old for three hours three times a week. She is doing a great job overall. Thankfully, she knows the place and the people well and we started transitioning her in January. The first day I think she was just excited to be there that she did not cry when I left. My dear new friend, Rachel, took Fiona & I out to distract me. She did such a good job that we lost track of time and were five minutes late picking her up! The second day I left the room and heard Whitney crying, "mommy, mommy". I have to tell you that I did pace the hall until she settled down. I just had to know she was okay. Then I went home with Fiona and went on a cleaning frenzy to distract myself.

We begin again on Monday followed by my favorite spina bifida moms for coffee!

January 15, 2010

Clinic Appointment

This morning we had our spina bifida clinic 6 month appointment. This consists of seeing many doctors back to back, in theory, throughout the morning and sometimes into the afternoon. Thankfully for Whitney and I it was only the morning. At two years old Whitney weighed in at 26.5 lbs and 34 inches long. I will highlight the main points for you.

Speaking of height. He mentioned Whitney may be at a disadvantage in the height department. Each child with spina bifida has a tethered spinal cord. This means the spinal cord becomes caught, or tied down during bone growth by scar tissue and needs to be surgically released. Since we are a tall Dutch family she is genetically disposed to being taller and may have more issues in this area. We can only hope she received the long leg gene and not the long torso one. He has no concerns with her and said we can see him in 1 year!

Physiatrist (rehabilitation physician):
Thought she looked great. He encouraged us to do some spatial and language testing when she is 4 1/2. (You may need to remind me that I need to make that appointment, since it is only 2 1/2 years away.) Many children with spina bifida struggle in these areas to varying degrees. This is one of the many ways that spina bifida is hard to treat because there is such a wide spectrum.

She thought her spine, feet, knees, and hips looked great. She also told me not to be emotionally attached to her hip growth and I quickly admitted that I was. She warned/prepared me that although her left hip is growing great right now, it is still weak and may very well come out of socket... I am so invested in this hip as we have spent many months 'nursing' it. I guess it is a great reminder not to discontinue praying for it, as God is ultimately in control. She also said that she is not seeing very much quad strength and that without quad strength it makes walking very difficult. She is not saying so now but alluded to having higher braces than just her AFO's for walking. She also wants us to start the search again for a standing frame. So, if you know of any we are in the market again!

I also wanted to mention to you that I have been blessed with getting together once a month with other spina bifida moms in the area. We just had out coffee night this week and it is so encouraging to chat with others who are in similar circumstances and who understand. Thanks ladies!

January 7, 2010

Whitney, you are two!

Can you believe Whitney is two already? Matt and I reminisced a little this morning. We were expecting a planned c-section on the 8th and I went into labor on the morning of the 7th. What a surprise! I think she was more than 2 weeks early. I can hardly remember. I just remember having contractions and thinking, "I am not prepared for this". Labor was not an option with this pregnancy.

As I was thinking about what to share with you today I had a difficult time remembering too much about that day two years ago. I have to say that I think it is a blessing. I even went back to read the posts from that week. What an emotional time that was. A few things stand out to me. I remember that not being able to hold her was so difficult for me. I just wanted to sneak in there and snatch her up. It was also so surreal to go home and leave her there. These are both so unnatural. Here are a few pictures to help narrate her first two years.

This picture brings tears to my eyes as it helps me remember the first time I laid eyes on our dear Whitney.


Meeting Fiona

7 months old (starts wearing hip brace & still smiling)

The purple cast

I am one!

Starting to stand. 20 months old at The Conductive Learning Center.

I am two today! Today we had a fun day of celebrating. We made Christmas cookies, & went to the library. I know, I am a month late, but we finally made time for it. I am not gifted as a craft mom and it is hard for me to justify making such a mess. We enjoyed ourselves as Whitney kept saying, "mess, mess".

January 4, 2010


We had a wonderful Christmas over here. It was pretty busy but a great time with family and friends. The girls are learning life lessons about envy and sharing. Fiona received a new baby doll for Christmas. Whitney saw it and immediately started to cry and yelled, "my baby, my baby!" She is still 'stealing' it whenever Fiona is not paying close attention. We are also learning about sharing as so many of our new toys are age appropriate for both of them. Fiona received 3 small my little ponies and immediately said, "this pink one is for Whitney". Those are the proud moments. The girls are also learning how to play together and love each other. I put a lot of emphasis on this at home as I know that they will need each other in life not only to get through the play ground years but beyond as well. I pray that they will have a true love for each other.