We got the phone call late this afternoon with the rest of the information on the MRI.  I am still somewhat in shock and am really struggling.  I am asking for prayers for healing for her, for strength, courage, and peace for Aaron and me, and for wisdom for the doctors. 

Turns out that the tumor that we knew about that we can see under her tongue actually extends up her entire right cheek and goes all the way from her right eye to near her right ear.  It is all intertwined with the muscle, fat, nerves, and blood vessels.  It is possibly inside the bone around her right eye also.  She may get a CAT scan to determine that.  Tuesday a team of doctors - the heads of genetics, neuroradiology, neurosurgery, and oncology will meet to discuss her MRI and try to come up with some kind of a plan for what to do for it.  It is growing and very invasive. 

The MRI also showed that she has a second tumor.  This one is on one of her optical nerves.  At this time it is small and, as for as optical nerve tumors go, not in a bad place.  She will need to see an Optometrist  who will do a vision test on her and then in 3 months she will have another MRI and vision test to determine if it has changed at all.  If it has not, they will do another MRI in 3 months and if nothing has changed, she will get on a schedule of having MRI's every 6 months to check it.

Tomorrow her nurse will call the hospital concierge to schedule 3 appointments the same day, preferably this week, but if not next week.  Those 3 appointments will be 1) the NeuroFibromatosis Clinic, 2) the Ear Nose Throat Specialist, 3) the Optometrist.

"The Solid Rock"

My hope is built on nothing less
Than Jesus' blood and righteousness;
I dare not trust the sweetest frame,
But wholly lean on Jesus' name.

When darkness veils His lovely face,
I rest on His unchanging grace;
In ev'ry high and stormy gale
My anchor holds within the veil.

His oath, His covenant, His blood
Support me in the whelming flood;
When all around my soul gives way,
He then is all my hope and stay.

When He shall come with trumpet sound,
O may I then in Him be found,
Dressed in His righteousness alone,
Faultless to stand before the throne.

Chorus:
On Christ, the solid Rock, I stand -
All other ground is sinking sand,
All other ground is sinking sand.

Love, Dawn

Thursday started early.  I woke up at 4:15 and fixed Susanna breakfast and then I woke her up at 4:30 and gave her oatmeal with cream and butter added to make it as filling as possible.  I knew she couldn't eat again until after the MRI.  Then I put her back down to bed where she slept until 9:00.  I went back to bed, too, although it took me until 6:30 to fall back asleep.  Aaron and I woke up at 7:30 and then woke up the rest of the children at 8:00.  We ate breakfast together and then all got ready for the trip.  We got on the road about 10:00.  I nursed her at 10:30 (counts as clear liquid) and she drank water from her sippy right before 11:00.  That was the cut-off time we'd been given as we were to get her checked into Radiology at 1:00pm.  We've been teaching her sign language and it made me so sad as during the drive she kept signing "eat" and "drink" and "milk" at us and I had to keep telling her that I was sorry but we couldn't do that.  Once we got to Cincinnati, Aaron dropped Susanna and me off at the hospital and he took the rest of the children to the zoo.  We got checked in no problem and settled in for a long wait.  I was able to be with Susanna through them putting her under with some gas.  Then they took her off for the IV to give her general anesthesia and for her MRI.  She was scheduled for 5 scans - neck, jaw, 2 of the face, and brain.  They were able to get the IV needle in on the first try, which I was glad about. They were worried that with her being so pudgy they might have difficulty with it.  They had estimated the time of the MRI as being about 45 minutes, but it turned out to be closer to 1 hour and 20 minutes.  After kissing her good-bye, I first went down to the cafeteria and ate.  They were running late in radiology, so she didn't go into sedation until about 3pm.  I hadn't eaten anything since breakfast, as I didn't want to eat in front of her when she was so hungry.  After eating, I went to the Chapel and spent time there just praying and reading in Psalms.  I had a little pager with me, the sort they give you at restaurants, and when it went off, I went straight to the Radiology Recovery room.  I returned the pager to the nurse at the desk and then went over to where Susanna was laying.  I had requested that they page me just as soon as she came into Recovery, so we spent about 15 minutes just watching her sleep.  The nurse told me how she would wake up groggy and fussy and other children were in the room demonstrating just what she meant.  However, they didn't know that Susanna is the happiest most laid back baby I've ever known.  :-D  When we woke up Susanna by sitting the bed up some and then rubbing her and kissing her, she woke right up.  She looked around trying to figure out where she was and then smiled.  She waved hi at the nurses (she loves waving at people) and drank some water from her sippy.  The nurse said I could hold her, so I sat in a chair with her and she gave me kisses and drank some more water.  There wasn't even a moment of fussing!  The nurses thought she was just unbelievable and asked if she's always like that.  She sure is!  :-D  They let us go pretty quickly and Aaron picked us up outside of the hospital.  We drove to a hotel just inside Kentucky.  She ran a fever that night, but otherwise did not seem to have any ill effects from the general anesthesia.  The next morning, we went downstairs and enjoyed our free hotel breakfast and then all swam and played in the pool together.  Susanna was outfitted in a swim diaper, a onesie, and an itty bitty life jacket.  She loves to kick her legs around in the water.  Then we all went to the Creation Museum.  (www.answersingenesis.org)  We passed Ken Ham leaving as we arrived.  That was neat!  We had a wonderful time at the museum.  It is SO neat!  I called over to Children's twice to see if they had the results yet, but it wasn't until about 4:15 that we got the call.  Of the 5 scans she had done, we only got results from the jaw one so far.  We'll find out about the rest of the scans on Sunday.  Susanna has a plexiform neurofibroma tumor under her tongue.  It is fast-growing.  Her nurse is going to schedule her on Monday for an appointment with an Ear Nose Throat specialist.  Our two immediate prayers at this point are that it can be surgically removed and that it is benign (non-cancerous).  We are also praying that the other four scans do not reveal any additional tumors.  Her right cheek is still visibly swollen, but we are praying that it is due to the known tumor.  Thank you to everyone praying for her!  Thank you, also, for all of  your encouraging comments that you leave for me!  Those really bless me!

Love, Dawn

Susanna is 16 months old now.  Since we moved to a new county, we are working with a new Early Intervention.  Here, the parents are responsible for locating the therapists needed for their child.  I have found a wonderful physical therapist for Susanna, but am still looking for a speech therapist.  The physical therapist did a thorough evaluation on her and found her to be at about 8-9 months development in her gross motor skills.  Her fine motor skills are excellent.  She has ordered a big exercise ball that we're going to use daily with Susanna to help strengthen her torso muscles.  Just in the last couple of weeks, she has gotten into a hands and knees position and been able to hold it for a couple of seconds before falling to one side.  I'm excited at that progress!  Other fairly recent developments include learning to get into a sitting position on her own and improved cruising down the side of a piece of furniture. 

She still loves cuddling and nursing, but is also turning into quite the ham in her high chair during meals.  She loves to make her siblings laugh.  The last few days she's been a bit on the grumpy side due to 2 eye teeth and 2 molars all coming through at the same time.  OUCH!  She'd just gotten two other molars through before these started up.  Hopefully we'll get a little break before the next teeth start pushing their way through!

For those newer to my blog who do not know, Susanna has NeuroFibromatosis, a genetic tumor disorder.  If interested, you may look at all of the updates on her from when we first found out about it under the category "Susanna Updates."  As always, thank you to everyone who is praying for her!

Love, Dawn

I took Susanna in for her next check-up at the NeuroFibromatosis (NF) Clinic at Children's today.  Here is a recent photo of her:

The visit went very well.  Her spine is nice and straight.  Her legs aren't showing any bowing.  They didn't find any signs of tumors.  Her vision looks good.  Her blood pressure was good.  She definitely has over 30 cafe au lait spots.  She has a secondary sign of NF also - she now has auxillary freckling, meaning spots in her underarms or groin area.  In her case, they are in her left underarm.  Her height is in the 25th percentile, weight in the 50th, and head circumference in the 98th.  They said that is definitely still within normal for NF patients (you often see short stature and large heads) but if her head size goes off the growth chart, they'll want to do a brainscan to make sure that it is not a brain tumor causing the gain in head size.  They were delighted with her weight and said that she's definitely lost her failure to thrive status.  lol 

They were pleased that she is receiving weekly physical therapy through Early Intervention, as she is now delayed about 6 months in gross motor skills.  She cannot get into a sitting position on her own or hold a hands and knees position or those sorts of things.  She also has language delays and they would like for us to immediately add speech therapy for her.  They said that if she were otherwise normal, a wait and see approach would be fine, but with the NF and the high rate of learning disorders with it, we should start therapy as soon as we see a delay.  I learned today that it is possible she has apraxia as she has both gross motor and language delays.  It has a high correlation with NF.  However, it is also possible that she has the two delays independent of each other.

She'll go back in 6 months for her next check-up.  Thank you to all who are praying for her!

Love, Dawn

The last two days have been very busy for us with doctor appointments.  Miriam's appointment was yesterday.  She is 2.5 and we have been highly suspecting that she is on the autistic spectrum for a while now.  We took her to our new family doctor (new since the move) yesterday and after asking a number of questions, the doctor was in agreement with us.  We will have an appointment with the Autism Clinic down in Columbus for the diagnosis.  Our son, Thomas (9) has High Functioning Autism/Asperger's, so we recognize a number of similarities from how he was at this age, yet they are also very different.  Early Childhood Intervention will be calling us next week to get us started up on free therapy for her.  We did that with Thomas and it really helped him.  Please pray that we can help her to become all that God intends for her to be.

Today we took Susanna (10.5mo) to Cincinnati Children's.  Her appointment with her Pediatric Geneticist went well.  We were delighted to learn that the high fat diet we've had her on has been effective and she's risen from 3% weight to 15%.  She's currently 18lb2oz.  Woo-hoo!!!  She's maintaining the 25% height and 75% head circumference.  They said they were so pleased to see a chubby Susanna.    They sent her over to the Allergist/Immunologist as she has been reacting to an increasing number of foods.  She'll barely start eating it and her right cheek will become bright red and puffy.  Anyone ever heard of anything like that?  They did skin testing on her and the foods all came out negative.  We'll get the results of the RAST blood allergy tests back in a week or two.  If those come out negative, they think she might be having a dermatological reaction to the food, not a food allergy.  In that case, she can probably go ahead and eat the foods.  That would be very helpful!  We could then test them one by one and see if she just stays red and puffed and then it goes away or if anything else (like rash, etc.) happens.  As long as it's not hurting her at all, I guess it's fine for her to get a bright red puffy cheek.  Weird.  They did some other blood work on her, too.  Oh, I almost forgot to mention, her blood pressure was great.  Thank You, Lord!

We'll be seeing Susanna's Family Doctor and her Gastroenterologist next in December, and her Geneticist again in February.  In the meantime, we need to also get her in to an Endocronologist for some tests.  I'll try to get that set up next week.  Susanna continues to be developmentally behind physically and her Geneticist is going to get Early Childhood Intervention set up to start working with her as well.  Thank you for all who continue to pray for her and our family!

Thank you also for the neat ideas for Christmas gifts I can make.  I'm getting excited about getting started on these various projects.  The holidays will be so nice this year.  We've spent quite a few alone as our families live far away.  This year, my mother-in-law and our neice will be able to visit us for Thanksgiving and my parents will be able to join us for Christmas.  Both will be so very special with our much loved family here!

I have a very exciting announcement, but will save it until my next post.  This one's long enough.   

Love, Dawn

I haven't updated on Susanna in a while.  Thank you for all who continue praying for her.  Today she had an appointment with a GI doctor.  She currently weighs 15lb12oz (3% on the growth chart) and is 26.5" tall (10% on the growth chart).  The doctor asked us lots of questions.  He had us meet with a dietician who after talking with me felt that Susanna was taking in a higher caloric diet than would be normal for her height.  That would mean that either she's not absorbing properly the food she is eating or she's got a really high metabolism.  We're testing that over the next two weeks.  We are to give her a very high fat diet for two weeks and then weigh her.  At her recent rate of growth, that would put her at about 6oz weight gain.  The dietician says we should see at least 9oz of weight gain on a high fat diet if it is simply a matter of metabolism.  In the meantime, the GI doctor scheduled us to come back next Monday (9/18) for a sweat chloride test (for cystic fibrosis) plus a bunch of bloodwork and he's referring us to an Endocronologist.  So many doctors!!!  Anyway, I am going to go ahead and call her Geneticist and Nephrologist and see if they need any bloodwork done at this time, so that if so it can all be taken with that one stick next week.  I also need to schedule her next Genecist appointment.  She's up to 31 cafe au lait spots, so we now know for sure that she does have Neurofibromatosis.  She is also going to need to see an Allergist when she's a bit older for food allergy testing.  So far, she's shown herself to be allergic to dairy, wheat, corn, grapes, apples, pears, peaches, and carrots.  In fact, we've only found 7 foods so far that she can eat in addition to my breast milk.  We'll keep slowly trying her on more, one at a time.  She is developmentally about 3 months behind on motor skills, but seems to be steadily progressing.  Really her developmental skills line up with her size really well and are all at about the 7 month level.  Interesting.  Despite everything, she continues to be an incredibly happy baby and brings immense joy into our lives.  She has said her first word - "Papa," much to the delight of her Daddy.  The children got all excited, so now she regularly chants his name.  lol 

I took Susanna in to get weighed this afternoon.  She was 12lb2oz and 5 months and now at 6 months is 13lb1.5oz, so for the second month in a row she gained almost a pound.  This means she was able to stay on that 5% curve, rather than falling farther through the growth chart.  We are so glad!  She is up to 17 cafe au lait spots, so continuing to increase, but at a slower rate.  She's also had problems with passing her bowels for the last 4 months, but just recently has started going twice a week as opposed to once every 5-8 days.  Overall, we are very encouraged by her progress!  Tomorrow I will find out the date for her next appointment with the geneticist.  Thank you for all of you who are praying for her!

We're finishing up our homeschool year and will have our year end assessment this coming Tuesday.  I've been busy working with the children on getting their notebooks up to date so we can show them to him.  Cooking has been a big part of Naomi Ruth's school year and she and I have been having so much fun putting together a recipe scrapbook for her.  Thomas' delight directed binder is weather.

Once we've done the assessment, I'm going to sort through all of our homeschooling material, determine what we should keep and pack that, and then sell or give away the rest.  I don't know about you all, but I have amassed an enormous amount of homeschool stuff over the years.  I can't imagine that we'd ever actually manage to use it all.  This has been a really fun homeschool year and I'm looking forward to coming up with ideas for next year.

Our house closes on June 30th, so I'm hoping that by August we'll be all settled and ready to start up our next homeschool year.  We still aren't sure where it is we're moving to, but are praying that the Lord shows us really soon! 

Love, Dawn

Thomas found a frog today while feeding the dogs.  It's one of his before breakfast morning chores.  The children got so excited and wanted to know if they could go out and play with it.  I told them sure and they all raced out the door, except Susanna of course.  lol  I told them to come in as soon as they were ready for breakfast.  That happened at 12:30 this afternoon!    In the meantime, they built an entire froggy world outside, using our little cheapo swimming pool (the hard plastic kind).  They put water in it and then added rocks, a log, etc. to make it a nice environment for the frog.  They had the best time out there!  Mr. Frog has now been released back into the wild, my children's hands are scrubbed, and their bellies are full. 

We finally got a call from Children's and Susanna now has an appointment with a Failure to Thrive specialist on July 17th!  Is that nuts or what?  I say we all pray that she doesn't even need it by then! 

We are continuing to drink our green smoothies and totally love them!  I've noticed that my back pain has really lessened.  Praise the Lord for that!  We've been having them daily now for over a month.  I drink at least a quart a day.  I really believe that they are helping Susanna, too!

Love, Dawn

We're taking Susanna to a closer Children's auxillary this afternoon to have her blood pressure and her renal bloodwork rechecked.  I took her in to our family doctor on Monday and we are delighted that she has grown in weight, length, and head circumference.  However, she isn't growing enough so is continuing to fall right through the growth chart.  She's now up to 12lb2oz and is 5 months old.  We are still waiting for an appointment with a Failure to Thrive specialist.  Thank you for your ongoing prayers!

Love, Dawn

We got back from Children's today.  Her echocardiogram of her heart looks good.  Praise the Lord for that!  We met with the nephrologist.  He explained last week's kidney ultrasound results to us.  It looks like she might have a neurofibroma (tumor) growing on her kidney.  However, with her blood pressure results being better today and the doctor determining that it would be dangerous to do the angiogram on her at her current age/size, we're going to wait.  Her nephrologist, her geneticist, and our family doctor are going to consult on Monday and come up with a plan together that involves her having checks done on her every couple of weeks.  We're also going to add a failure to thrive specialist to her list of doctors.  Thank you for all of your continuing prayers!

Love, Dawn

Tomorrow we head out at 4:30am to go back to Children's.  Please pray for safe travel and for wisdom of the doctors and for safety for dear little Susanna.  Pray for peace for Aaron and me and for alertness on the drive.  Thank you!  I will update when we are back home.

Love, Dawn

I took Susanna in to our family doctor's office yesterday, per the request by Children's.  They were able to get the urine sample by taping this little bag directly to her body.  The first time, the potty went everywhere.  The second time, the bag worked.  They are checking for blood and protein in the urine.  They weighed her and I am delighted to say that she's now up to 11lb12.5oz, so still growing, although slowly!  The nurse who took her blood pressure had not taken the blood pressure on an infant since nursing school and according to her findings, her blood pressure in her arm is a little high and her leg blood pressure is dangerously low.  I highly doubt the accuracy of the numbers.  However, the same pattern of her leg blood pressure being lower than her arm blood pressure was found as was seen at Children's last week and that is the opposite of what is normal.  The next step is going back to Children's on 4/21.  My husband's mother will be flying in to watch the children while we're gone.  That's such a huge blessing!  Thank you to all of you who are praying for us and encouraging us during this time!

Love, Dawn

I spoke with Susanna's nurse today.  The tests on Wednesday showed some problems with her kidneys.  They said that she needs an angioplasty, but are not sure if they can do one on her with her being so tiny.  We need to go back to Children's next Friday.  She'll start with an echocardiogram of her heart and then we'll go meet with the Nephrologist (kidney doctor).  He will examine her and determine if we can do the angioplasty or if we need to look at the kidneys through a different procedure.  We will at least be there all day Friday (1st procedure at 8:30am) and may stay the night and be there Saturday as well.  In the meantime, we were given all of the signs of kidney failure to be watching out for and need to get her immediately to a doctor if she shows any of them.  Oh, we also need to take her in to see her regular doctor on Monday so she can have her blood pressure taken and they'll also get a urine sample.  Please pray for the Lord's protection, mercy, and healing for Susanna.  Thank you!

Love, Dawn

Today was the big day.  We took Susanna in for her appointment.  She has 11 definite cafe au lait spots now and several other probable ones.  The doctor said that until we get a second diagnostic sign, we can't say definitely that she has neurofibromatosis (NF), but it is highly likely.  She expects we'll see the next sign within a year and a half.  We need to go back in 3 months.  In the meantime, she is concerned because Susanna has high blood pressure (123/79 - should be about 80/40) and isn't growing well.  We did a number of tests on her kidneys and another blood draw to monitor her white blood cell count and will get those results back tomorrow.  NF sometimes causes kidney problems.  That's all we know for now.  Thank you for your prayers.

Love, Dawn

I wanted to share the wonderful update that at Susanna's weigh-in this afternoon we learned that she has gained weight!  Woo-hoo!  Praise the Lord!   For those who do not know, her weight had peaked at 2mo and had been going down since then.  She just finally crossed back over her 2mo weight and is now on the growing side.  She's about 4.5mo old.  Thank you to all of  you who are praying for us and encouraging us.  The next step for Susanna is her appointment with the Pediatric Geneticist at Children's this Wednesday morning.

Love, Dawn