From Four to Five times Two

Announcing Oliver Micah Nelson!
Oliver arrived on May 14th 2011 making our family of four into five. He has only been here for 6 short weeks and we can not imagine life without him. He is such a blessing to all of us. the biggest news is that he is a healthy boy joining us at an amazing 10 pounds and 4 ounces. (: I can not tell you the countless times we prayed during this pregnancy for a healthy and strong child. The results: Oliver. He is so strong he has already rolled over from his tummy to his back. He is an answer to all of our many prayers. Thank you for praying along side of us.

I can not explain to you what a gift a healthy child is. Now that I have experienced the difference on either side. A healthy child is EASY not to mention a tremendous gift. The list is limited as to why he is crying: dirty diaper, tired, burp, I don't even know what else! Shortly after he was born Matt was watching the nurse clean him. I will never forget watching Matt look at Oliver's back and giving me the non verbal nod that all was well. There have been times, however, that both Matt and I have thought, "be careful for his shunt" or "carefully burp him so you don't hurt his scar" or try to change his diaper while he is sleeping and forgetting that he can actually feel his little legs. Each time this has happened has been an opportunity to thank our God. Each time in my sleep deprived state I smile and thank him for another healthy child. It is amazing how perspectives can change. I have also caught myself giving him physical therapy! I realize what I am doing as he kicks me away.

I have only ventured out to the grocery store with all three once. It is a challenge to get them in the store but after that we are set. The girls are loving having a brother. The first few weeks we had to address a little jealousy but now both girls always want to hold him and see him. Matt was home for the first week and helped me in so many ways. One example is that he gave the girls chores which has helped them both be more independent. This has been especially important for Whitney. I have been forced to look at things a little different to give her more independence because I can't always do it anymore and it has been great for her.

Whitney has had a few appointments over the last few weeks. She is looking great overall. her walking has not increased too much since winter. She unfortunately has developed knee contractures in the past 9 months or so. This basically means that her knees are slightly bent at all times. We do stretching and massage to try to loosen the tendon but have come to the point where she will need to get a night knee brace. We also had her fitted for her first wheelchair. I had been dreading this appointment for years and there I was. The appointment went very smooth and it was really not emotional just factual. I think having Oliver helps a bit. Now he is the one who needs the stroller and Whitney is a big girl. When I told Whitney about the appointment the day before I was shocked that she was the emotional one. We talked it through and the next morning she was excited to go and told me that she wanted a pink one. She has such a personality. I wish you all could meet her. The other day I referred to her walker as a him and she corrected me saying that it was a her. I wonder what she will call her wheelchair. . .

May 16th our dear Fiona went from four to five. I was praying that I would not be in the hospital on her birthday and I was able to be discharged the afternoon of her birthday. We had a small family of five birthday party for her. She was so excited to be the birthday girl. Five is so much fun. Fiona has always been a delightful child and continues to be so. She loves to memorize, sing, help, and wonder how I know so many things. (: She is headed off to kindergarten in the fall and is very excited about it. She does such a great job being a big sister. Sometimes she will teach Whitney a song with the wrong lyrics insisting that they are right. She will answer Whitney's questions with an answer such as, "that is just how God made it Whitney, THAT'S why". She just had her 5 year well child visit. Here are her stats:

Weight: 41.2 pounds (70th percentile)
Height: 45 1/4 inches (93rd percentile)
This year she grew 3 1/4 inches! Just amazing.


I will end with a conversation Whitney and I had last week:

Whitney: "Is my scar still there?"
Susan: "yes, but that is okay."
W: "That's good. When I go to heaven God will take it away."
S: "That's right, God will heal you."
W: "Will you help me run to Him?"
S: "I won't need to. You will be able to do it by yourself."
W: (Huge Whitney smile) "I will run to Him!"

Hip Hop

We went to see Whitney’s hip doctor today and had an x-ray. Her hips are now perfectly symmetrical to each other! This really is amazing if you look from where we have come and how this will benefit Whitney in the future in so many ways. I remember back to making those hard decisions with Matt as to if we should take the chance to have a surgery, months of a hip spica cast and hip bracing. Not to mention putting her behind with therapy, strengthening, standing, and walking several months all for a 50/50 chance. All that stress and extra work was well worth it! Our family of four has prayed many prayers for Whitney’s hip and we are so thankful that God has poured out His blessing on her and has indeed healed her in this way. Our concerns of future issues with her hips and potential scoliosis are now considerably diminished. We are so thankful.

Here is a little prayer Whitney prayed the other night that made me smile:

“Thank you for this food and drink
and for my baby, that it’s legs will work.
In Jesus name AMEN.”
(Amen is said with gusto.)

Whitney is 3

Yes, Whitney is now 3, as of January 7th! I am so far behind in updating you. I thought I would attempt to bring you up to speed. Her birthday was filled with My Little Pony, Littlest Pet Shop, and little mouse figurines. She had a fantastic time with her family and we even brought cupcakes to her therapy school. It was quite exciting!
Here are her 3 year stats:

Weight: 33 1/2 lbs (75th percentile)
Height: 38 3/4 inches (85th percentile)
Head circumference: 46 1/2 cm (20th percentile)
They estimate that she will be about 5'8! Just so you know that is very short for our family. (: We will see!

The past 3 years we have had a physical therapist come to our home once a week. When a child turns three our state no longer provides this service but it changes to a school setting. After much conversation and meetings Matt and I decided to enroll her at one of the public school programs on Friday afternoons. She very much enjoys her class. The plan is to use this class setting to prepare her for a 'regular' classroom. All of the children in her class have different needs: fine motor, speech ect. However she is the only one with gross motor or physical needs. This will hopefully be a good piece in her transition to pre school and kindergarten. There is another 3 year old girl who likes to 'help' Whitney. It is very cute.

She is also continuing to attend the Conductive Learning Center 4 mornings a week. She is still loving it and slowly but surely making forward progress and gaining strength. Her stamina for walking is increasing and she is doing a great job with her walker.

Now that I am towards the tail end of my pregnancy I can not carry her as far as I used to and still use her stroller quite a bit. We are beginning conversations of the dreaded wheelchair which will more than likely be a reality this year. There does not seem to ever be a lack of decisions to be made.

Whitney has been blessed by the most enthusiastic attitude. People often comment on how positive Fiona is and we smile because we know Whitney is even more so. She LOVES her sister. Loves school, church, sunday school, BSF (Bible Study), and donuts. (: After church on Sunday she yells, "Yeah, sunday school!" Now that I think of it she often yells when she is excited which is frequent. Her positive attitude is a blessing in our home.

Today I had an interesting moment where at Fiona's swimming lessons someone asked me about Whitney and if she had swim lessons. So, I told her that Whitney has spina bifida and after seeing the confusion on her face I gave her a brief description of what it was, and telling her she goes to swimming at a rehabilitation hospital. She said, "oh, I am so sorry". The reason why this struck me was because I think for the first time I thought to myself, "why are you sorry"? i didn't' even think it though and was not sure how to respond so I didn't. It is awesome to see a shift in my thinking and how spina bifida has become so normal to our lives. I can't tell you how blessed we are by her and how often she blesses others.

Matt also had a birthday these past months. I would say that it was his best one but I am not sure he would agree with me. (: It was a blizzard that day and we literally could not leave the house until 9:00 that evening. So, the girls and I enjoyed having daddy home for the whole day!

Our pregnancy is going great. We are getting more and more excited to meet our little one. We are now down to 7 weeks! The girls are very excited and call the baby, Snap Dragon. (: We have caught on to the name as well and so that is the name until the real name is revealed.

20 week ultrasound update

Well, here we are in 2011 and I have much to update you on from the end of 2010. Matt and I went to our ultrasound at the same high risk office we were at with Whitney. It was kind of an odd feeling being in the same room with one of the same ultrasound tech we had with the previous pregnancy. This time there were many things different. First of all we were much more educated on 'reading' the ultrasound and there was not the same feelings apprehension. The ultrasound lasted a good hour. Matt and I were watching the monitor and we began the narration. "okay, there is the brain. . . I don't see any banana or lemon sign. . . thats good. . . The spine looks closed. . . The feet look good. . ." and so forth. I really wish I knew what the ultrasound tech was thinking. (: We knew the signs to look for in regards to spina bifida. The techs are not supposed to say much but she agreed with our assessments. We then met with the doctor and she affirmed our observations that all was looking great. We are SO thankful for this good report.

Following the appointment I realized that I felt relief. I did not notice that the anxiety was there until I saw that all was looking healthy. We have a new perspective on what a gift a healthy child is. We are so blessed.

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.

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.

TRUST

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.

The Faces We Love

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!

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!