Happy Birthday Fiona!

Conductive Learning Center

We are glad to report that we were able to go to therapy this week at the Conductive Learning Center (CLC). Whitney and I were both overwhelmed by the possibilities of what we can now work on to achieve. I think we both were shocked by the thought of moving since she has not been able to move for 9 months. This is new and exciting ground we are treading on. I could feel Whitney's heart racing as we worked on all of our new 'tricks'. She did a very good job and I think she will get more comfortable as I add them to her daily routine.

Here is an idea of what we are currently working on:

-Sitting up independently from laying on her back.
-Sitting on her hands and knees for a period of time. (This is one of the things she is anxious about doing.)
-Strengthening her back muscles.
-Sitting with her back straight on a bench stool with her feet flat on the ground with and without shoes while reaching for -toys on a desk of sorts.
-Standing in her new shoes (AFO's) while holding on to a bar to balance herself. (another source of anxiety)

Yes, you read that right, standing! She looked so old to me. It was a very exciting and exhausting morning. We were able to get another appointment to go there next Thursday as well. We are learning to hold our plans loosely but the current plan is to go to CLC a few more times this month and in July. Our next step would be to join a parent and child session in September and then possibly every morning, 5 days a week, beginning in January when she turns 2. We have not figured out all of the details but I am sure they will fall into place as time goes on.

Needless to say we have had an encouraging week. Thanks for checking up on us.

8 Hours

We received some great news today on Whitney's hip growth. The doctor was optimistic about her progress. First she said we could take the brace off for therapy only. Matt asked if we could have a total of 3 hours off a day. She paused and after further examination said that we could have 8 hours! We were shocked. The goal is to get to 12 hours a day but what a great place to start. She did say that we need to see her in 4 weeks to check on how it is doing. If the growth is declining then we will need to increase the time in the brace. Thank you for your continued prayers.

This Thursday we will pick up her standing shoes (AFO's). It is so exciting to be progressing forward again. I already have phone calls in to get her back into therapy. I hope Whitney is as excited as we are!

Urology

Thank you for your prayers yesterday. The two specific requests regarding her kidneys were answered! Her kidney's have been growing at a normal rate and have no apparent scarring from the UTI's. Regarding her past UTI's our urologist is not convinced that they were 'true' UTI's. He showed me the lab results and the bacteria numbers. (I am learning a lot.) Other than the one UTI that she was hospitalized for, the others show 3-4 bacteria where there should only be one present. He suggests that the next time we suspect an infection we go it to have Whitney cathed so that we obtain a true specimen without other bacteria. In order to prevent future infections we will continue to keep her constipation under control, continue probiotics, and add a concentrated cranberry supplement called UNI-Stat.

Her bladder shows no signs of reflux but does show signs of leaking. Her sphincter muscle showed no signs of contracting. He does not have high hopes of her wearing big girl pants but did not say it was impossible. He summarized her as a work in progress and we will see where she is in 6 months time.

We continue to trust in our God, the healer, who is able to do the impossible. Exodus 15:26b " I am the LORD who heals you."

15 Months

Her appointment with her orthopaedic doctor went well. It was a little hard to hear that Whitney is behind. Her hip has really slowed her down but I need to remember that it is worth it and she will catch up. The next step we are waiting for is to order standing ankle foot orthosis (AFO's) and a standing board. Basically, special shoes to stand in and a board of sorts with Velcro to hold her in a standing position. We plan to head in this direction once we get the okay from her orthopaedic surgeon. We hear from her again on May 4th. Please join us is praying that her hip develops so that we can move forward from here.

Today we saw the pediatrician for Whitney's 15 month appointment. Here are her latest stats:
Height - 31 inches (80th percentile)
Weight - 20 pounds 14 ounces (25th percentile)
Fiona at 15 months was 3/4 of an inch taller and one pound heavier. I love watching my girls grow and change in their own way. What a delightful gift they are.

Wednesday Whitney will have an afternoon of testing at the hospital for her kidneys and bladder.
1. Ultrasound - test of sound waves to examine the kidneys size and shape as well as the bladder.
2. VCUG - Insert a substance which will outline the size and shape of her bladder by x-ray which will detect reflux.
3. Urodynamics testing (CMG) - Determines how much the bladder will hold and detects abnormal bladder contractions, increased bladder pressure, and assesses sphincter muscle.
Immediately following the tests we will meet with the urologist to review the information.

Out prayer is that her kidneys have not scarred from her frequent urinary tract infections and that they are growing at a healthy rate. Please also pray that we will make the right decision for her care in this area after hearing the test results.

Gracious Advocate

How do you accomplish this for your children? In the last 15 months I continue to learn how to be my children's advocate. Fiona was easy and with Whitney I have to have all of my medical information at the ready. My mind is in constant filing mode as I need to remember appointments and information. Last week I realized that I had not heard back from one of Whitney's doctors. The receptionist forgot about rescheduling her. "You forgot my child?!" Is what I thought in my head, as my inner mother lion roared. I did not say that but responded firmly insisting that they fit her in quickly. I can now only hope I handled it correctly. I am so thankful that I have the time and energy to deal with these things and I just need to remember that we are her number one advocate and yes, mistakes will happen and that is what I am here for. I just need to be gracious.

We are here

Yes, we are still here! I took a blog vacation and a real vacation since writing last. As many of you say to me, "no news is good news". This past week Matt and I took a vacation to Napa, Sonoma, and LA. It was a wonderful refreshing time to celebrate five years of marriage together. We saw amazing beauty in the mountains, vineyards, and the ocean. The girls did very well. Fiona was with her grand parents and I wonder if she even knew we were gone! Whitney was with my brother and sister-in-law and missed me a bit but received much love in my absence. What a gift to be recharged.

Whitney is growing and developing so quickly these days. This month she cut her first two teeth, said "ma-ma" and "cup" and had her first haircut. There is no new news on her hip growth. We continue to be patient and pray that it is developing. We are going to begin a new kind of therapy that we hope will put a little weight bearing on her hips to stimulate the growth plate. We continue to have a daily struggle with her bowel movements as her large intestine moves too slowly. We are trying a combination of Activia, Benefiber, and Miralax which seem to be helping. Next Thursday we meet with one of her orthopaedic doctors so I am looking forward to an update there. I will keep you all posted.

More Brace & Happy Birthday

Happy Birthday, Matt. Thank you for being such a wonderful husband and father. You are a gift.

The appointment today on Whitney's hip went okay. We will need to keep the brace on full-time for another 3 months and then reevaluate. We compared the x-ray from the beginning and that looks encouraging. The hip is definitely growing. However if you compare the x-ray from three months ago there are only slight changes. So, we are waiting for her body to kick in and ossify the cartilage above her femur. I am looking for a good picture to show you all what this looks like but I have not found a good one yet.

Enjoy your week.

MRI results

Wednesday afternoon we brought Whitney to the hospital for the MRI. We were placed in our own room and were told they were going to do a oral sedation. We were immediately thankful that she would not need an IV. The nurse let me give Whitney the syringe of sleeping fluid. I was thankful for this because for some reason, as the mom, I think I can do it better than the nurse. (: Then we turned the lights off and she was sopossed to just fall asleep within 15 minutes or so. She eventually fell asleep, woke up and fell asleep again. Matt and I went off to get a little food with pager in hand. She was supposed to sleep an additional 2 hours after the MRI to sleep off the affects of the medication. However, when we arrived back in our room Whitney was already awake. She proceeded to be fussy until bedtime. I am so glad that this behavior is unusual for her.

Thursday we went to the doctors office for the results. Her Chiari II is obviously present. It looks as though her spinal cord doubles over itself near the base of her neck. Very interesting to see. Since we have not experienced any symptoms or problems we do not treat it. Symptoms would include difficulty breathing or swallowing. There are a few other abnormalities in her brain but all of it is common for spina bifida patients. This was great to hear. I learned that all of spina bifida patients have a tethered spine but once again if there are no symptoms then we do not treat it. Issues may occur during large growth spurts. Such as when she is 3-4 and 11-12 years of age. So, we will worry about that later. Her shunt looks like it is operating wonderfully.

Thank you all for praying for Whitney. We are so thankful that the results were all positive. The next thing up ahead is February 2 when we see via x ray how her hip is doing.

Happy Birthday Whitney

Whitney turned one this week! Fiona continues to remind me that she is two and Whitney is one. It makes me think twice. They are both a delight and are very happy together. We celebrated with Matt's family enjoying cake and presents together. They were both excited about their new red wagon and yes, I gave Whitney a little frosting.

We started the year with another urinary tract infection (UTI). This is her third so far. Thankfully I suspected something before it got too bad. I was fearing that we would end up in the hospital again. We just finished one round of antibiotics and will start another for the next 6 weeks. This should enable the bladder to heal and prevent another one from forming soon. We also went to the pediatrician today. She mentioned that Whtiney's constipation may be contributing to the frequent UTI's. She prescribed a laxative and fiber for her. We will start that today and hope for good results.

Whitney's latest stats: 85th percentile for height (30 1/4") and 60th percentile for weight (21lbs-4 oz). Looking good.

We have an MRI scheduled for next Wednesday. Please pray that the sedation goes well. Specifically that they are able to get the IV in as she is a hard poke. Also, that it shows her Chiari II malformation is not hindering the flow of spinal fluid, that her shunt is continuing to preform correctly, and that her spine is not becoming tethered. We are thankful for all of you.

Pictures

We thought that we'd start the year with a recap of last year (or at least through October) in pictures.

Whitney, a few days after coming home


1.5 months


Baptism


Fiona & Whitney


3 months


Fiona "washing" dishes


4 months

6 months

7 months

Before surgery on her hip

The cast

From another angle

With Great-Grandma

Merry Christmas

I can hardly believe it is the end of the year! We have been so spoiled not to have any appointments, tests, or surgeries during this holiday season. We are so thankful. Both girls have enjoyed thier new toys and it has been fun watching them play together.

Whitney is doing great although a little crabby from teething. Still no teeth and her 1st birthday is next Wednesday! Our constant daily battle is her constipation issue. I need to assist her with her bowel movements more times than not. We will have her one-year appointment with the pediatritian next week so I will inquire more of what can be done for the present and future. She sits up very well on her own, can hold herself up on her knees with her arms locked and can move backwards when she is on her tummy. These are all exciting things for us. We continue to massage her legs and feet a few times a day to help increase her circulation.

Brace- She continues to wear her brace full-time. We have an appointment in the beginning of February to check how her hip is progressing. Please continue to pray that it is growing sufficiently enough that we can go to part-time wear. This would enable her to go back to a more intensive therapy.

Great Month

I thought I would just let you know how well we are all doing. It has been a great month with no doctor appointments and much travel. We were out of town as much if not more than in town this month. Taking advantage of each moment together. We first drove to Cincinnati. Matt had to be there for work so the girls and I saw the zoo, aquarium, and relaxed at the hotel. The following week we were in Chicago. We stayed downtown and had fun shopping and saw family and friends as well. We are so thankful we were able to travel with Matt. Then we went to New Buffalo with some old college friends. The girls are great travelers!

Good/Bad

We had a hip appointment this morning. Good news is that the hip is still in the socket! It is continuing to develop. We are so thankful to receive good news that her body is continuing to respond. I was reminded today as I looked at the x-ray how detailed our God is. He made our bodies in an amazing way. They are so complex. She also said that we do not need to go in for another 3 months. I can't believe it. Wonderful news.

On the flip side, for the next 3 months we are to keep the brace on at all times and continue to only remove it for a maximum of one hour a day. Therapy will need to take a back seat as her hip develops. Hopefully we are able to catch up when Whitney is able. I just have this strong desire to want the very best for her and sometimes we can't have it all. (:

Enjoy the day.

Neurosurgeon appointment

We met with the neurosurgeon this morning and reviewed Whitney's CT scan that we had at the hospital a few weeks back. The shunt seems to be doing great. We are scheduled for a MRI for January which we will then use as a baseline for her for the future. Unfortunately she will need to be sedated for this since it will be 45 minutes in length. The CT was only 5 minutes. I do not care for sedating her but I will think of it again in the new year. Not something to worry about now.

We have started to think about beginning Whitney's alternative therapy again at the conductive learning center. We have taken a break since her hip surgery and have just been doing physical therapy. They unfortunately can do very litlle with the brace on and the brace is only allowed off one hour a day for bathing etc. We see the orthopedic doctor next week concerning her hip and in the hope that her hip is continuing to develop I will ask if we can begin to have more time with the brace off. We do not want to miss other developmental possibilities such as crawling and standing.

Fiona Wants Purple

Fiona informed me this morning that she wants a purple brace. "Whitney pink, Fiona purple brace" She was very serious and I had to smile. It also reminded me how thankful I am to have a healthy daughter. I am so thankful that Fiona does not need a brace and that she was able to point this out to me. There are so many things to be thankful for.
Just thought I would share. Have a wonderful week.

Appointments Gallore

We have had a few too many appointmnets this month. Thankfully it is drawing to a close and we only have one so far next month. Just in time for the holiday season. I need to back track a little to update you.

Pediatrician: 20 lbs and 4 ounces and 28 inches long. She is growing well and seems to be on track with language and fine motor development. We were thankful for a good report after her recent hospitalization.

Urologist: We had 2 appointments. The first at the hospital for an ultrasound. They looked at Whitney's kidneys, both front and back, and her bladder. The second appointment was this past Friday where we saw the doctor and were given the results of the ultrasound. Her kidneys are healthy and it appears that no damage was done during this last bladder infection. Her kidneys are growing at an appropriate rate. We are very thankful for this report. She will have many urinary track infections to come but in six months we can start a special yogurt formula and a cranberry supplement to try to control this.

Plastic surgeon: He checked the scar on her back and thought all looked well. The cast had caused her skin to break down along her scar but it has healed up nicely. We do not need to see him until next year! This is great news. I am daring to hope that the appointments are starting to become fewer and fewer between.

Next week we meet with our neurosurgeon and he will check her shunt. I hope he will go over the MRI we had while we were in the hospital. I am curious to hear more information. The first week of November we find out how Whitney's hip is doing through x ray. Please continue to pray that the brace is able to hold her hip in place and that the hip continues to form correctly.

Praise

The cast is off! We can hardly believe it. I have been smiling all day. Whitney had an x-ray with the cast on to check her hip and all looked well so we proceeded to remove the cast. I was nervous to see what was beneath the cast but the cast itself and her skin looked better than what I had hoped. We are so thankful! The first thing Whitney did was put her toes in her mouth. I think she missed them. We then had an x-ray taken with her brace on to see if the brace was able to keep the hip in place. It worked. The hip had grown sufficiently in the past 6 weeks enabling the brace to do its magic. Whitney and I began dancing a little in the exam room and our doctor reminded me that this is progress in the right direction but we are not out of the woods yet (I still wanted to dance). We compared a before and after x-ray and I was able to see that the cup of her hip is no longer as straight as it once was. It still has a way to go but it has started to develop! Our next appointment is in 4 weeks when we will check how it is doing. Whitney is to wear the brace at all times until then when we can reassess. If the hip does decide to come out of socket again there is little to nothing we can do. Thank you all for your diligent prayers and please continue to pray that God, in his healing hand, will continue to form our little Whitney's hip socket.

One year ago we were in Philadelphia at the beginning of this journey. Thanks for walking with us as we continue.
Matt, Susan, Fiona, and Whitney

1 More Week

One week from today we find out how the cast has been working. We will either leave the doctor's office with a cast or a brace. Please pray that we will not have to put on another cast and that Whitney's hip will heal in the correct location.

We saw the eye doctor for the first time yesterday. They were concerned about her optic nerve and this was more of a precautionary visit. Her hydrocephalus put pressure on her eyes before her shunt was placed. Thankfully her optic nerves look normal and are developing well. She is a little near sighted which is common for her age and should go away by the time she is ten. The doctor did a wonderful job and Whitney was only slightly uncomfortable when they dilated her eyes.

Thankful

It is time to remember what we are thankful for:

1. Loving family
2. Solid marriage
3. 2 beautiful girls
4. Helpful church family
5. City with excellent health care
6. Great house & neighborhood
7. Joy & peace from the Holy Spirit
8. Job & insurance
9. Vacation next week
10. Whitney's skin infection clearing up
11. Fully operating shunt
12. More than 1/2 way done with the cast

There is so much. What a mighty God we serve.