Zoe Ann Casmer

2nd Birthday!

2011-10-25T18:57:00.003-05:00

Monday we celebrated and gave thanks to God for Zoe's second birthday.

Zoe has continued to learn new things and exhibit a strong will that can only mean that we will need to watch out for those teen years. She has been building her skill set and slowly catching up with her peers. We try not to get caught up with the milestones, knowing that the fact we are moving forward is evidence of God's grace.

Zoe has a passion for music and books and has started to enjoy dolls and puzzles. It is amazing how the little ones learn so quickly and eagerly. Sponge is an excellent description.

We have greatly appreciated the interest that many have taken in Zoe's life the past two years, and the help so many have offered. Throughout, we've tried to hold the theme that "no news is good news". As we reflect over this year and the last, we realized that Zoe's day to day life is quite routine and for the most part "normal". God has blessed us pretty regularly of late with "no news". Thank God for his many blessings! That being said, this will be our last post for Zoe's blog. We are thankful for the prayers, words of encouragement, and support you have all given us, many of you whom we have never met. God bless you and your families as he has ours.

Philip, Kimberly & Zoe Casmer

September 2011

2011-09-08T08:54:00.003-05:00

After a busy weekend of traveling and seeing family we are finally settled at home and getting back into our daily routine.

One item taken care of, Zoe's check up with her neurologist. He was happy to see how well Zoe is progressing and encouraged us to keep up the therapy to help her progress. So a short but wonderful visit.

Zoe continues to change and grow before our eyes. She is quite a talker and loves to figure out how things are put together and taken apart. She is getting to enjoy certain foods more and this allows meals to be more pleasurable for everyone involved. We are happy to see this improvement.

We hope you are all having a great start to the school year.

Another Blog

2011-08-17T19:19:00.000-05:00

Please check out Zoe's pics on Emily's blog!

http://emilyebelingphotography.blogspot.com/2011/08/zoe-18-month-milwaukee-area-childrens.html

2011-07-12T19:17:00.003-05:00

It has been a long time since we have had an actual update, I have been wanting to wait for Zoe's latest doctor appointment that way we are all on the same page.

Zoe has continued to show improvement in various areas, especially the weight gain. Currently at 23lb and 4oz she is now considered overweight for her 29in frame. Ha, who would have thought we would be at this stage especially since she still does her best geyser impression once a day. So as with any child, Zoe is changing the game and we are making the necessary adjustments to help keep down the food and stimulate the appetite for more solids.

Zoe has also been getting around a lot more often. Though we are not quite walking or standing, she loves crawling and climbing everywhere. She has also been chatting, babbling or whatever you call it non stop. Recent words now include, eggy, pepper, and oval. We have been truly blessed.

God bless you,

Casmers

Summer Fun

2011-06-13T21:12:00.002-05:00

What fun are we going to have at the park?

Swinging Time

2011-05-26T08:52:00.003-05:00

Just a quick note before I wake Zoe up from her nap.

Things continue to go well with Zoe. She seems to be keeping her food down more often and her inclination to eat a few bites during a meal is consistent. We continue to pray that the "light bulb" will come on and she will eat more each time.

Zoe is also growing well, though we don't have an official weight, we are definitely over 20lbs. My arms can feel it.

She loves to play and to pet the cat (which she calls "meow") and to swing. We hope the warm weather stays for a while so we can head back outside.

Blessings to you all!

Happy Easter

2011-04-26T11:51:00.001-05:00

Blowing Kisses

2011-04-07T14:20:00.003-05:00

We have had a full couple of weeks with Zoe's appointments but we are happy to report some great news.

First Zoe is continuing in her growth. Measuring at 18lbs. 14oz. on a 28in frame, she is considered average. Who knew average would sound great?! The recent changes made with medications and schedule have made it easier for Zoe to keep her food down and be more willing to eat a bit more of her solids. We can now focus specifically on her eating her solids and drinking from a cup.

Zoe also continues to be a "boring" case for her neurologist. Her MRI showed nothing of concern so we continue to monitor her and focus on her therapies to get her caught up and keep her on track with her peers.

Zoe also is making nice strides in her therapy though she is bound and determine to keep some of her bad habits. We will continue to do her exercises to break her from these and build skills for the next developmental milestones.

Zoe is also making herself heard more often now. Peek, play, up, baby, meow and bath are her favorite words. She can say mom and dada but prefers to point and yell "up" or give kisses when she needs our attention. Can't deny she is a girl that gets to the point.

Oh, I think the little one stirring from her nap now... Here is a kiss and have a great day!

Spring is in the Air.

2011-03-24T12:24:00.002-05:00

Well as we are approaching the end of March, we wanted to let you know how our first three months of 2011 are going.

Zoe continues to grow and learn some new skills, we are happy to see how she is progressing. We recently had a change in Zoe's medication to help stimulate her appetite and decrease her mucus production. We are curious to see if this helps. Despite having a small appetite, Zoe has been eating well, she loves her Cheerios, carrots and the occasional banana. She is also learning how to drink from a straw.

In Zoe's other therapies, Zoe has been working on her flexibility, identifying animals, and building strength in her legs.

It has been a great joy and blessing to see Zoe come so far and to see how far she goes. We continue to pray for continued blessings on her.

Getting Ready to Cruise

2011-03-07T06:55:00.000-06:00

Watch out world, here I come.

Spring Get Here Soon!

2011-02-24T13:57:00.001-06:00

Today I Would Have Been 1 Year Old, If I Wasn't So Eager

2011-02-10T20:29:00.003-06:00

We have been blessed with a full year of Zoe being home. At times it has been nerve wracking, worrisome, quiet, joyful, and always exciting.

We have been happy to see the progress Zoe has made over the past month. We are now crawling, putting toys away, and saying a few words like cat, ma, and baby. The Lord has blessed us.

We also get rid of the feeding tube and replace it with a Mic-Key button in the upcoming week. We are looking forward to getting rid of the plastic appendage.

Though we are unsure of what plans the Lord has for us in the coming days, months, and years we are confident in His word and promises and the comfort they will give us.

Working on that Crawling

2011-01-24T13:40:00.000-06:00

New Year

2011-01-11T19:49:00.004-06:00

I have been keeping busy the first few weeks in 2011.

First, I gained weight! I am 15lbs and 2 oz. I also got my first tooth! It is cute but some more are coming in. I also have been rolling over, but only in my bed. I also have been wanting to crawl. I hope it is soon, I really want to get moving.

I still keep up with my therapy and all my appointments. It's been cold so our outings have been limited to just that. That's okay I like to stay warm.

It has been a great start to the New Year!

Christmas and Zoe

2010-12-28T19:04:00.004-06:00

Phil and I have now learned why our parents were not as excited about Christmas as we were. Naps are no where in sight, presents upon presents to eat, and a series of church services and get-togethers that made bedtimes negotiable. But we did it, our first Christmas home with Zoe, we survived and she of course is no worse for wear. Regardless of the chaos that surrounded the day, we were happy to celebrate Jesus' birthday, singing hymns, and tell of this event to Zoe. How truly blessed we all our because of his birth and the sacrifice he made for us all.

All the festivities did push around around our normal routine but Zoe was ready to get back to work with her physical therapy appointment. The therapist was happy to see Zoe getting better at sitting up on her own and her assisted rolls becoming quicker. We hope with some more strengthening exercises we can get both of these to become unassisted completely. Zoe is also doing well with her feeding despite still having a stuffy nose and nagging cough. We continue to introduce new table foods as she as lost more interest in cereals and purees. So far she enjoys potatoes, chicken and beef broth, noodles, and grown up cereal. We continue to thank God for the success that Zoe has already made and patiently anticipate what the future holds for her.

We hope that you all had a wonderful and blessed Christmas. We surely did.

Today in the town of David a Savior has been born to you; he is Christ^a the Lord. Luke 2:11

Christmas!

2010-12-25T19:30:00.002-06:00

Christmas was fun! I am tired and need some extra beauty sleep so I will update you all later.

Merry Christmas to you all!

Mid December

2010-12-17T07:36:00.002-06:00

Unfortunately Zoe had her first trip to the ER on early, early Thursday morning. She developed another round of croup that we were not able to resolve on our own so we headed to the emergency room to get a dose of steroids and time with the nebulizer. Both were quick acting and we were home in an hour and a half resting comfortably in bed.

Zoe continues to have this mild cold or side effects of teething. Either way, she has been a little under the weather and has been keeping both mom and dad on their toes. We pray she is her old self by Christmas.

We continue to be busy in the Casmer home as we gear up for the holidays and Zoe's therapy schedule ramps up to get her closer to her milestones by February. We also have been getting check ups her various doctors. We are happy to see Zoe is gaining weight but is still taking her time with the process. She is currently 14lbs and 11oz and 26in long. As we make more adjustments to her diet we hope to see a faster rate of weight gain.

God's blessings as we celebrate the Advent of our Lord and we look forward to sharing pictures of Zoe's first Christmas home.

A Visit to Santa

2010-12-12T07:51:00.002-06:00

Just had to see Santa yesterday to wish him a Merry Christmas. I was a little nervous but mommy was there while daddy took our picture. I got an ornament and a toothbrush. I love my toothbrush! Fun to chew on.

I am pretty busy this month. I have had extra therapy to get me caught up with some skills that I just seem to need a little help with. I also have my check up with my GI doctor so we can get a weight check, evaluate my diet, and see how my tube is healing. Mommy says my and daddy's schedule is a full time job in and of itself. Do you know what that means?

I hope and pray you are all having a wonderful CHRISTmas holiday.

Who Me?

2010-12-07T22:01:00.002-06:00

First Cold/Croup

2010-11-30T20:15:00.006-06:00

Well once the Thanksgiving busyness came to an end, Zoe got a cold. She is doing well, just stuffy and tired. We are happy that it has taken so long for her to get her first cold.

I also wanted to let you all know how Zoe's new feeding plan was going. Some people have asked how it works so I thought a little explanation was due. With the help of a dietitian, we determine the amount of food Zoe needs to eat to gain weight at a reasonable rate. Once that is in place every feeding Zoe is given a bottle to give her opportunity to take it orally. If Zoe is refusing to eat or we have passed a reasonable amount of time, the food is just placed in a feeding bag where it is pumped in her stomach at a set rate. The set up is quite easy and apart from caring for her new "belly button" the process is similar to when she had her NG tube. Zoe is healing quite well from her surgery and is even back to spending a little time on her belly again.

The Lord has continue to bless us with Zoe's strength and cheerful disposition. We are thankful for all He has given us.

Happy Thanksgiving

2010-11-27T08:28:00.003-06:00

I am sorry this is so late, I have been quite busy with my family this holiday. I hope you all had a wonderful Thanksgiving. I know I did, love those yams!

Overdue

2010-11-20T11:16:00.002-06:00

Sorry this is late, getting resettled at home took a little longer than we had expected. Here is a quick note of how things went.

Zoe's surgery for a feeding tube was successful and apart from some soreness she is doing very well. She doesn't seem to mind an extra appendage and is quite happy to have nothing on her face.

So as we get used to the care for the PEG, Zoe will continue with her therapies and growing up.

Have a blessed weekend.

Hopefully This Will Make it Easier

2010-11-11T14:08:00.003-06:00

Hello to you all on this fine November afternoon,

Zoe decided once again not to eat her bottle, very frustrating but less stressful since we can just get it to her via the tube and not worry about her nutrition. So while we patiently wait for her to finish eating I wanted to update you all on the recent going ons in Zoe's life.

The weight gain for Zoe is now noticeable to us, she has finally jumped up to the 6-9 months clothing and her arms are getting chubby once again. It is great to see and she is definitely wanting to do more with the extra calories, she enjoys bouncing, talking, and pushing more off of the ground.

If you recall, Phil and I decided to proceed with the G tube (the feeding tube directly to the stomach) it seemed to be the next step and we wanted to get it taken care of prior to the holidays rather than wait for an extra month or two. So next week if Zoe is healthy we will be going in for the minor surgery. Funny to consider it minor but for the surgeons it is and soon Zoe will be sporting a PEG (Percutaneous Endoscopic Gastrostomy) or a tube for three months and once the area has healed she will have a button. The nice thing about this is that once we no longer need it, the button will be removed and it will healed like a pierced ear.

We also had a check up yesterday with Zoe's neurologist. He was happy to see that she continues to be a boring case but we needed to monitor some tightness on her left leg. Thankfully we have physical therapy so with their help if it seems excessive we can take steps to make sure that she is flexible. We will have one more MRI next spring but after that he sees no need to keep it up. Praise God!

Well there goes the beep on the pump and Zoe is looking at me like she is ready to get back to playing. Maybe if I am lucky we will get a nap too.

God's blessings,

Kimberly

Autumn Joys

2010-11-05T21:01:00.004-05:00

I'm a growing girl, it's plain to see,

With lots of plans made by me.

Feeding myself is oh so nice,

Apples, veggies and some rice.

Chewing on things is also a joy,

Too many for a favorite toy.

14.5lbs is where I am at,

I am officially bigger than my cat.

We are hoping some skills will begin to happen,

Like rolling over and finger snappin'.

It's quite late and I'm ready for bed,

Good night and God bless, 'nuff said.

Happy Reformation and Halloween

2010-10-31T14:32:00.004-05:00

Woo Hoo! I picked out a pumpkin, had an adorable costume, and spent time with friends. Even though this is my second round with these holidays, I am celebrating it like it's the first.

I am gaining weight now I have a feeding tube in my nose, but I do not like it. So Mommy and Daddy are getting me a tummy tube instead, this way I can rub my face and not worry about pulling my tube. (I have pulled it out a lot already and it's not fun when it goes back in.)

Now I must be going, I have some playing to do and I hear that there is another holiday in a month where we eat turkey. I better get growing so I can do that.

Today I am One Year Old!

2010-10-24T16:41:00.006-05:00

It has been a long 365 days but with God's grace we have made it to year one.

Zoe continues to do well and is now growing with her handy NG tube. We are excited for the push to February (Zoe's year one mile marker) and seeing the milestones she will accomplish but we are also a little sad to see how quickly it is all going by. Time does seem to go by so much faster with children.

We thank you for your continued support and

prayers. Please enjoy Zoe's pictures and current stats.

+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

Weight: 1 pound 3 ounces

Height: 11 1/2 inches

Greatest Achievement: Breathing and

pooping

Weight: 14 pounds 2 ounces

Height: 25 1/2 inches

Greatest Achievement: Clapping hands, babbling, and pooping

Home Sweet Home

2010-10-19T07:56:00.002-05:00

We got the okay and we are now back at home.

Yea, now we all get to catch up on some sleep that was sorely missed.

An End in Sight?

2010-10-17T19:15:00.003-05:00

Sunday evening and as Zoe is getting the rest of her feeding placed in her stomach by her tube, here is an update on how things stand in Zoe's world.

Zoe's feedings were upped to 130cc, which is just little over four oz, six times a day. She really did well on Saturday only have one large throw up. She was able to take over half of her feedings orally so it seemed to have the markings of a great report from the doctors. The doctors were pleased especially after they saw a weight gain of three oz. Though this is a lot more than we expected, we figure she must be playing catch up.

As long as Sunday shows some results like Saturday, we will be going home on Monday. Yeah!!! Zoe has not been eating as well today, however I feel this is more to do with exhaustion and lack of naps in the past 5 days than anything else. It is tough to get rest when someone is poking, taking blood pressure, and temperature every four hours. Plus, she is now digesting more food than she has in the past so her body is working harder. I hope then when we get home she will have more energy once we have a quiet environment and routine back in order.

So here is praying for a great Monday report and my own bed in the evening.

Our New Home

2010-10-16T08:59:00.003-05:00

Family & Friends,

We wanted to let you all know how things are currently with Zoe.

After inserting the tube on Tuesday evening we began using it to feed Zoe once she would no longer take the bottle. The first day or two we only had to use it once or twice a day. We also met with a dietitian and therapist to help with improving the feeding skills and create a plan so Zoe would gain weight over the long term. Each day the doctors have been increasing her volume in food and so after four days we thought we would see some improvement.

However we know this stubborn little girl. Though Zoe is tolerating the tube in her nose, we have yet to see any increase in weight. She continues to throw up and though they are not overly concerned about that any longer, she did decide to have a spectacular day on Friday. We won't be discharged till Zoe can show some improvement in this area. So as we have learned, patience and prayers are what will get us through this.

In the meantime, we have been very blessed with wonderful nurses and staff making our "home" comfortable and easy. The doctors have been very knowledgeable and doing their best to help Zoe grow. And the well wishes and prayers have been comforting as we do our best to adjust to everything.

Persevering,

The Casmers

24 Hours and We are Still Here

2010-10-13T19:19:00.005-05:00

Never believe something if it is too good to be true, because most likely it isn't and the greatest blessings are the ones you don't expect.

This was supposed to be a one day procedure. We planned our Tuesday to be Zoe's the one day to get her feeding tube inserted in her nose and monitored to make sure she was fine. I was packed for our overnighter, Phil had cleared his schedule, and I had taken care of the laundry and other chores for the day we would be gone. I was pleased to know that Tuesday morning was not going to be a hectic frenzy mess as we tried to get out the door. I didn't realize how open the day would be, the hospital had called to push back our admission since there were no beds available for Zoe, "early afternoon we should have something and we will call you before noon." The wait only built the anticipation of the procedure and made us second guess ourselves over and over as we waited. So we killed time playing, going for a walk and as noon approached no call. One o'clock approached and Zoe was peacefully napping when again no call. 3 o'clock we finally had the go ahead and we made our way.

We arrived and were checked in and slowly getting settled in for our short stay. As the nurse gave us forms to sign and tour of our room their was suddenly a concern about why we were now being admitted fully rather than the normal quickie. Oh well, just some paperwork issues, not our concern, right? We met the resident doctor and other doctors and repeated Zoe's spectacular history many many many times. They are just being thorough and making sure as students, they dot the i's and cross their t's, I hope. It was getting close to Zoe's bedtime and the nurse was eager to put the tube in so I could feed her and finish up if necessary with the tube. We didn't have orders from the doctors yet and they were trying to create a feeding plan. Plan? I thought this was a just finish up with the pump what she doesn't eat process? I thought surely they just want to make sure we don't go up to quickly with her food and we use the pump in a reasonable fashion. Yes, this will be quick and we will have a plan.

As bedtime approached and passed and a hungry, tired little girl could no longer be consoled with nursery rhymes or toys, the tube was inserted. Not pleasant, uncomfortable, and of course just not what we wanted to do so late in the day, but it was done and Zoe was soon in my arms taking her bottle and falling fast asleep.

Then it happened. The attending doctor arrived and suddenly we are informed a whole bunch of things that we were not prepared for in any sense of the word. More tests to see why Zoe won't eat and throws up. Minimum of 5 day stay so they can get her up to the proper volume needed for her size. Won't be released till significant weight gain. And so much more that after a day of processing makes sense and is quite reasonable, but at 9 pm, exhausted, hungry, emotionally drained, not the news a parent wants to hear.

Right now the timing of coming home will really depend on Zoe. How quickly can they get her to tolerate the pump, how quickly can they get her to eat the ideal amount of 26-30 oz a day, and how quickly she can gain the much needed catch up weight she needs. They have tested her thyroid, good to go. They are checking for infections, no word yet but I assume good because we haven't seen any antibiotics. We are working with the speech therapist on the bottle, I have to say after one visit what a difference. All in all, we are very fortunate to have the team help us figure things out. We also felt affirmed about this decision once speaking with the dietitian and doctors that they were happy to see Zoe was not at the point of being emaciated, lethargic, and developmentally behind. We were being proactive about an ongoing problem and this would make for a quick resolution.

God has continued to pour his blessings on our family and we are so thankful and happy about

this. So though this unexpected extended stay

has made life a bit complicated, we are happy to see how it is making life so much better for Zoe.

They Really Should Come with Manuals

2010-10-07T19:41:00.004-05:00

Well it has been a long week and it is only Thursday, but now that I have a few minutes I wanted to give you an update that has been happening in Zoe's life.

First, we had our follow up meeting with the GI doctor and as expected he recommended a feeding tube. Zoe had not gained any weight the past ten days and her spitting has not decreased. Though her development continues to do well there is a concern that soon the low volume of food will have an adverse affect. In addition the doctor suggested, seeing a new feeding therapist was recommended. Zoe is a "sleeper feeder" and she may be associating sleeping with the eating which may be causing the decrease in volume now that she is up more.

We didn't make a decision right away, we wanted to meet the new therapist and see what they suggested and discuss ourselves what would be best for Zoe. Meeting the therapist was very encouraging, she too suggested a feeding tube, as she really wants to work with Zoe on eating solids since this is an appropriate age for that rather than working with the bottle. She also stated that this would relieve a lot of stress and worry as we won't have to push Zoe as hard with the bottle feedings but allow the tube to handle whatever Zoe doesn't want to take by mouth.

So next week we will be staying at Children's Hospital while the staff teach us how to do all the things we need to with this and observe Zoe to see how she handles her new accessory. If all goes well it will be a one day visit. Please pray for Zoe, Mom and Dad as we take on this new challenge.

Results Are In

2010-09-30T20:39:00.003-05:00

I was hoping to upload a video of Zoe talking, but unfortunately I could not get this to work so instead you will have to make do with a picture.

However, we did receive the results of the biopsy and Zoe definitely does not have EE. This is wonderful news! We still don't know what is going on but we know for sure that isn't it. We will meet with the specialist next week and see what he recommends we do and we will most likely be going to get some more opinions from other doctors.

We hope you all have a phenomenal weekend.

The Casmers

11 Months Old

2010-09-24T21:19:00.002-05:00

Today I turned 11 months old!

Despite my yucky Wednesday I was back to my normal self today. Still a little hoarse in my throat but I don't mind too much.

I also went to see my pediatrician today and he was happy with my weight, 13 lb and 9 oz. Not a lot, but he says I am holding my own which is great.

I continue to be active and I even figured out how to take a nap, but mommy shouldn't get too used to it, I still like to be up and play as much as I can.

I have therapy next week, so I can't wait to hear how I am doing and if I am staying on track with my milestones. Mommy also started me in Baby Yoga, it is a lot of fun. (Who knew there were such funny names for stretches we do?)

Well I should go to bed, mommy likes me to get a lot of sleep, I don't mind, it just means I get up really early to play with her.

Love, Zoe

What a Long Day

2010-09-22T18:47:00.006-05:00

Family & Friends,

I write to you with droopy eyelids, but wanted to make sure I gave an update from today's events.

The endoscopy is considered surgery since the patient is sedated, so Zoe was cut off from foods and she didn't seem to mind, till the doctors were behind schedule. Despite the late start, Zoe was in and out. The GI specialist reported that visually everything seemed normal but we would have to wait for the pathology report from the biopsies to come back. Once we know more or not know more we can determine a plan of action. One possible outcome, a GI tube to be placed in her nose, down her throat and in her stomach. That's right just like when she was in the NICU. SIGH, well we will worry about that when we get to that point, right now let's get back to how the girl is doing.

Zoe was pretty upset once she woke up, which was immediately after the tests. I was able to get her settled down and she slept for a good forty five minutes. She has mechanical croup, an irritation of the throat due to the scope, so she sounds wheezy. Zoe is very gassy as well, they had to pump gas into her stomach to look around and though they pumped it out, some is working its own way out of the digestive system. The last effect Zoe has, she reeks of the gas they used to knock her out. Every time she breathes out you can get a whiff of what they used, needless to say this might be what is causing the recent headache and sleepiness for me. Once the sedation wore off, Zoe was her normal chatty self.

Thanks be to God for a safe and successful endoscopy. Thanks to you all for the thoughts and prayers for today. We are grateful for them and glad to now be home so we can get back to life.

God's blessings and Good night,

Casmer Family

I Learned to Scrunch my Face

2010-09-16T19:10:00.000-05:00

Not Sure What to Title This One

2010-09-11T20:15:00.005-05:00

Dear Family and Friends,

Before I get into the details of Zoe's life, I am requesting some prayers for another family who recently had 25 week old twins. I don't know the family personally, but I was emailed earlier this week regarding the family from a close friend because of our recent experiences. Please pray with us that the Lord guide the hands of the doctors and nurses and comfort the family as he so graciously did for us.

Life here in the Casmer household has been, well how could one put it, interesting. After our trip to Michigan and the struggle with Zoe's eating we returned home to find a girl that had an appetite. (Now when I say appetite I mean she is not fighting the bottle and eating more than an ounce at a time.) We were pretty ecstatic and surely thought the trip was overwhelming and being home back in her routine was what she wanted. We should have learned that Zoe lives to prove her parents wrong. Friday was a pretty icky day but with patience and prayers, the evening was better and apart from extra congestion and a cough, Zoe's appetite seems to be improving.

We did find out the GI doctor still wants to perform the endoscopy for the biopsy despite not having any allergies. EE is still a concern so we will be doing that towards the end of the month. We also had an eye check up for Zoe, you may remember one of our concerns with Zoe is the loss of peripheral vision due to the damage in her brain. The ophthalmologist currently sees no signs of this and was very happy with how alert Zoe was. We will still be going in for check ups because of Zoe's prematurity, preemies are at a higher risk for being cross eyed or having a lazy eye. Finally, we had our monthly visit with the physical therapist. She was very happy to see how well Zoe has come along in her sitting, 3 minutes unassisted, and the reduced tightness in her arms. There are some definite areas where we are lagging behind, falling reflex (using your hands to stop the fall) and some weak rolls on her left side. So we are armed with more exercises and we will continue to work on them.

On a side note for those who live near us, now that we are in the autumn/school season, we will be more cautious with Zoe with the increased sickness that tends to happen this time of year. We ask that you help us with that by avoiding her if you even feel an inkling of a cold, please resist the need to touch her, even on her foot (she loves chewing on it now) and for everyone's health wash your hands often. We were happy to not be home bound this fall and winter but Zoe's immune system is still not where it should be and would like to avoid her getting sick. Thank you for your understanding.

God's blessings to you all,

Casmers

We Can Keep the Cat

2010-09-06T21:05:00.004-05:00

We pray that you all had a wonderful and safe Labor Day holiday. We ventured to Michigan to visit family. Though the trip was fun and always great to be around family, we learned that little ones (Zoe) do not like change and will inevitably make a lovely vacation hard. Regardless, we were so happy to see family especially the now great-grandparents who had not met Zoe yet.

We did get some great news while away, Zoe's allergy tests came back, both turned out to be negative. We (mom) will need to make some phone calls to the doctors now to see if a biopsy is even needed or if EE is a possible diagnosis and see what other possibilities could be causing this ongoing trouble. Though this has been a very frustrating roller coaster of theories, doctors' and therapy appointments, and medications we are doing our best to stay positive and hopeful for a quick remedy.

With prayer full hearts,

Phil, Kimberly & Zoe

Labor Day Fun

2010-09-06T11:21:00.002-05:00

Have a Happy Labor Day

2010-09-01T19:43:00.002-05:00

Ten Months Old

2010-08-24T18:37:00.004-05:00

To all of Zoe's family and friends,

We come to you asking once again for prayers to be said on behalf of Zoe. First in thanksgiving that we have seen this little girl grow, thrive and accomplish so much in ten months with the difficult start she has had. Second, praising our Lord for giving Zoe and all the medical staff the abilities and knowledge to make it happen. Finally, petitions for the upcoming tests we have regarding Zoe's troubled eating.

We went to the pediatrician's office, Monday, for another weight check and found that Zoe had only gained 1.5 oz in three weeks. This brings her to 12lb 13oz, she should have been over 13lb if she was growing at an appropriate rate for her adjusted age. We had been making the switch in diet and things at home were actually going quite well, till we hit the weekend. Congestion, mucus, eating less than the minimum, we thought possibly a cold but there were no other symptoms let alone a crabby baby. So perhaps the onset of allergies, quite possible especially if you know Zoe's father. We are trying all the home remedies possible and seeing some improvement. However, the doctor has ordered an environmental allergy test and beefed up her formula hoping the lack of eating will be made up with the concentration.

Today, we had a follow up visit with Zoe's GI doctor. He was gravely concerned about her low weight and her continued lack of interest in eating. Of course we relayed the history and the new test order by the doctor and he decided to tack on a food allergy test and an endoscopy for a biopsy of the esophagus, stomach, and small intestine. The reason being, he is wondering if Zoe has EE or know by its long unpronounceable name eosinophilic enteropahy, this is an over abundance of white blood cells that begin attacking the body. This usually develops due to allergies, especially food. This kind of diagnosis would require complete diet restrictions and/or medications for the rest of her life, something we do not want Zoe to have to go through. Though as the doctor put it "well we would finally know" we are praying that this isn't the diagnosis and that whatever is causing this ongoing difficulty be resolved quickly.

The tests will occur over the next few weeks and we hope to have definitive answers a couple weeks after that.

We know that whatever comes in the next few weeks the Lord will continue to support and comfort us, he has taken us this far. I am certain he isn't giving up now.

Kimberly & Phil

Another Blog to See

2010-08-23T13:40:00.002-05:00

Good Monday! I just wanted to share a link that shares some pics we had taken of Zoe. Many thanks to Emily Ebeling for taking the pics and sharing them.

We especially love the last picture in the article.

Please enjoy and have a great Monday.

http://emandjonebeling.blogspot.com/2010/08/baby-photography-zoe.html

Napping Blues

2010-08-18T10:40:00.004-05:00

I do not want to take a nap.

I'd rather play on Mommy's lap.

I do not need a lot of sleep

Even if I cry and weep.

I'd rather play and rub my eyes

And make some noise till I arise.

Mommy gets me in a snap,

Because I do no want to take a nap.

Hot Summer Days

2010-08-12T08:24:00.008-05:00

Wow, August is hot. It's a good thing mommy has kept me indoors. Yucky.

I have a lot more exercises to do now that I have had a check up with my physical therapist. I am not as flexible as a baby should be so mommy will be helping me stretch every day. We also keep working on rolling and sitting up. Both are tricky to do but once I loosen those muscles I should be able to do it.

I also have been eating a bit better, mommy insists I grew but we won't know for sure till we see the doctor in a couple of weeks. A girl can't keep her petite size forever, right?

I am being more chatty too, sometimes waking up nice and early talking to myself till mommy or daddy come in and get me out of bed. What are my favorite noises to make, well I love grunting but laughing after being tickled is the best.

I must get going, I need to get washed up for the day and see what fun things mommy has planned. Hopefully they will all include air conditioning.

Just Having Fun

2010-08-07T13:35:00.002-05:00

Many Things To Be Thankful For and A Few Things to Try

2010-08-02T15:11:00.003-05:00

Yikes, August already. It seems like the summer flew by and I was shocked to see on the calendar that Zoe was 40 weeks old on Saturday. How the year has flown by.

We have just returned from a check up at the doctor's office and had an opportunity to meet with Zoe's new pediatrician.

Zoe has gained some weight, 12lb and 11.5 oz. The doctor said that though this is much lower than he would like, she seems to be following the pattern of growth that full term children usually have, a plateau or slower rate between months 4-6. In addition, looking at her and her development, she also seems great.

In light of this great news and review of Zoe's history of spitting and lack of appetite, we again are making some changes and trying new things. We hope that in a couple of weeks when we go back for another check up, we can see either an improvement in keeping food down or a jump in her weight.

Most encouraging remark from the pediatrician that reminded us of God's power, "If you knew nothing of Zoe's prematurity and medical history, you would never guess by the way she behaves, looks, and moves." God is good.

Nine Months (Then and Now)

2010-07-24T14:18:00.007-05:00

I Am Exhausted!

2010-07-20T11:20:00.005-05:00

Just a quick update from me. I had therapy today and I got a great report. My left side is getting stronger, I love to sit up with Mommy's help, and I am starting to respond to my name. I am doing so well I don't even have extra exercises to work on! I am so proud of myself!

Tomorrow, I have my NICU Graduate follow up visit. I can't wait to see all of my friends.

Well I am tired and I need to get back to my nap.

Weight Check, Please!

2010-07-14T14:44:00.003-05:00

Mommy and Daddy just had to know how much I weighed after my last appointment three weeks ago.

I am proud to say I am 12lb and 8oz. Mommy, Daddy and I don't know how I do it, but I am gaining weight.

Who knows what other tricks I have up my sleeve.

Corrected Age: Five Months

2010-07-10T07:28:00.002-05:00

Hello followers of Zoe,

We are nearing the end of the summer, so hard to believe it has gone quickly, and already looking at what we have in the coming months as autumn and all its activities approach.

Phil has been in school the past three weeks, summer quarter at the seminary, and as seen in the previous posts, Zoe has had some appointments some great and some that were inconclusive.

We had our monthly check up with the physical therapist. Zoe is demonstrating some strong five month skills, like the airplane and wanting to sit up on her own. Areas where she needs some more work, keeping her shoulders forward and opening her hands while sitting. So armed with new exercises we will work on these this month.

Zoe is still working on eating, though we have gotten past the screaming and refusing to eat phase, she still doesn't eat the amount the doctors would like her too. She also still maintains the mega spit up skill. We also give Zoe cereal two times a day, she is still getting comfortable with it but each feeding gets a little bit better.

We hope you all have a wonderful weekend and can get to enjoy the rest of summer and its sunny (warm) weather.

God's Blessings,

Casmer Family

I Think I Like It...

2010-07-05T07:57:00.002-05:00

Swallow Study

2010-07-02T21:00:00.003-05:00

Today we had a fun day at the Children's Hospital. When we say fun, we of course use that word quite loosely. Zoe was having a swallow study to see what could be causing the poor sucking, disinterest, and dislike of the bottle. I will have to say as a parent, the setting of said test is not really baby friendly and would turn me off on the bottle or even avoid participating, so I can only sympathize with Zoe.

Zoe was placed in a tilted chair as I stood in front and tried to give her the bottle with barium. The x-ray technician would then video x-ray the the suck, swallow and other important muscle movement. Zoe decided that at that point she would demonstrate her lack of interest, even though it had been 5 hours since her last bottle and she had only 1 ounce at that time. We decided to try spoon feeding her the barium mixed with pears. We did a little better, though I fear the barium really doesn't make the experience a pleasant one as it should be. Finally, we gave Zoe some barium in a small cup and had her sip from it. This again, great but not really the main point of the test.

So what was gleaned from this seemingly unsuccessful test? Zoe's muscles and reflexes work and their is no danger for aspiration or penetration. (Food going where it does not belong). Zoe most likely still has a weak suck and poor coordination, though afterwards she ate in my arms with some gusto that impressed the doctors low expectations based on the previous events. And Zoe has to work harder at eating than the average child.

So the next steps for the Casmer family in light of this news, we continue to pray that Zoe will finally be interested in eating especially from the bottle so she doesn't have difficulty later on with development mentally and physically. We will also give Zoe things to stimulate her mouth. Though her fingers continue to be a favorite, we will introduce cereal and fruit to her and hope that will be what helps her gain the weight and back to her chubby self. Till then we keep taking it one meal and prayer at a time.

Thank you for the continued spiritual support and continued prayers for Zoe.

She Learned to Tame the Bears

2010-06-27T21:11:00.001-05:00

So 2 Out of 3 Isn't Too Bad

2010-06-22T20:31:00.004-05:00

Today's check up left us with some good news and some not so good news that we had expected.

First, Zoe has grown in the way of height and head circumference so that she is now on the chart, albeit 5%, but on the chart. Her weight however, is now no longer on the chart. Due to the lack of interest in eating or the refusal to eat she is weighing in at 12lb and 1oz. Though Zoe looks good, this is a great cause of worry as she has only gained a couple of ounces in the past 3 weeks. We hope that the test next week can shed some light on what is going on and the doctor would like us to make some more dietary changes after that in order to see what interests Zoe.

We have a follow up visit with Zoe's neurologist, we expect it to be pretty routine and don't expect any big news.

We are also seeing the beginnings of the first tooth. As you can see from the picture anything and everything is making its way into the little one's mouth.

Please continue to keep Zoe in your prayers as we continue to work with her development and her eating.

A Quick Update

2010-06-15T20:15:00.006-05:00

Hello, I just wanted to drop quick update with what I have been up to.

We had therapy last week and today and both therapists have been happy with the progress I have made. I am grabbing on to my toys, lifting my head, and improving my head control. All very good things I am told. We have a few things to keep working on like rolling over, strengthening the left side of my body, and sitting on my own.

Eating still isn't my forte but we have a test in a couple of weeks to see what my muscles do as I am eating. Hopefully this will help the therapist and doctors figure out how to make eating easier for all of us.

It has been quite rainy so no walks, but I am looking forward to some sunshine soon. I hope you all get to enjoy the summer wherever you are.

How Blessed Indeed

2010-06-06T20:48:00.002-05:00

We are happy to have celebrated Zoe's baptism with our family, friends and church. It was a wonderful reminder of God's awesome power in faith and in life.

Amidst all the celebration and guests, Zoe was a wonderful trooper through it all. During the affirmation Zoe gave a couple of smiles and even folded her hands for prayer.

We want to thank everyone who have and continue to pray with us. It is truly an awesome gift the Lord has given us.

God's blessings to you all and good evening,

Casmer Family

Lifting My Head

2010-06-02T17:45:00.000-05:00

Awake for a Little Bit

2010-05-26T14:19:00.006-05:00

Today, Zoe had an MRI and a check up with her neurologist. Apart from the crazy eating schedule Zoe did a great job, took her sedative well and was done in half an hour. The long part was waiting for Zoe to wake up from the sedative and then getting her to eat something.

We also met with the neurologist for a short visit, because Zoe really wasn't awake for the exam. The MRI shows that the brain is doing well and no cause for alarm. However, the doctor did notice that Zoe was more reflexive in one foot, possibly an issue of pressure in the brain. The positive side of this is that Zoe isn't showing any other "symptoms" of increased brain pressure so we will follow up in a month's time with the doctor again. If it is in fact an issue with built up brain pressure we will have to look into having a shunt put in. We are praying that this is not the case and that Zoe was just having a bad foot day.

Earlier in the week we met with the feeding therapist and another doctor to help assess the eating issues we have been dealing with. We have some more exercises to do and now have another test, a swallow study, in the next couple of weeks. This will help the doctor determine if we are in a phase or some kind of disconnect happening during the eating.

Thanks for your continued prayers and words of encouragement. We continue to trust and be hopeful about what the Lord has planned for us and Zoe.

She Doesn't Like Barium

2010-05-20T17:37:00.005-05:00

We received the results of Zoe's upper GI and apart from a very messy effort on the technicians part, trying to get Zoe to take the barium, the results came out normal. Though this was expected, we are happy to officially hear it.

Zoe has been eating a bit better the past few days, we think the new medication she was on affected her appetite. We still plan on seeing a feeding therapist to see if we are dealing with behavioral issues or just typical baby stuff.

Zoe's MRI is set for next week, just a check up on the development and growth. We should know the results fairly quickly since we meet the Neurologist later in the day.

We, her parents, are inclined to think that she simply has a bit of attitude going on, as is on display in the above picture. I mean, honestly, who wouldn't be proud to sport such an obviously stylish number?

Just Doing a Little Workout on the Balance Ball

2010-05-19T20:18:00.002-05:00

Oh the Specialists We See

2010-05-14T15:26:00.002-05:00

Well I was hoping I would only post an adorable picture of Zoe today, but she decided that was not enough.

We have recently run into a little snag of Zoe not eating well. I am sure any of you as parents have experienced the battle of wills. Like many other babies, Zoe is quite determined to have her way, not unlike her mother, but because of her history we are concerned about the long term affects. So under the advisement of her Dr. we will be seeing a feeding specialist next week to get an evaluation of what is going on.

We are praying that with a few pointers and strategies from the therapist we can minimize the tears and get back on track.

At the very least, we can't say she didn't make life exciting.

The Theme Remains "Wait and See"

2010-05-11T19:21:00.007-05:00

Today the weather was quite dreary and rainy and was a good day to say inside, but Zoe had a visit with the GI specialist at Children's Hospital and so it was an afternoon in Milwaukee.

The doctor felt that the irregularity in Zoe's past urine test was not something to be concerned about, but he was going to consult another specialist to just confirm. We are praying that the doctor's thoughts are correct.

We also discussed Zoe's spitting up. A lot of this is going to be waiting for Zoe to grow out of it, but we will be getting an upper GI x-ray to confirm that everything is where it should be. So again we will wait and see.

Zoe continues to do well with her milestones. In the past two weeks we have had visits from her physical and occupational therapist. Though we have a few things that she needs to work on, we do continue to see her progress in a timely fashion with her corrected age. We are very happy and excited about this.

Blessings to you all,

Phil & Kimberly

Ready for Church

2010-05-04T20:22:00.000-05:00

Another Check Up

2010-04-27T16:42:00.004-05:00

Today Zoe had her routine check up. For the most part things are going very well and the pediatrician is happy with her progress. She is currently 10 lbs 14 oz and 22 1/4 inches. She is growing at a nice steady rate and is still going to be short like her mom.

We also found out we will be seeing some other specialists. There is concern that Zoe's diet may need to change once again due to some anomalies found in a urine test done. The doctor wants to make sure she is getting all she needs so she can reach her full potential with her development.

The other specialist we will be seeing is a GI doctor. We are hoping to finally get this acid reflux/spitting up situation under control. It is hard to believe that such a face could cause such a mess.

We pray that whatever changes made, Zoe has an easy time of it and that the doctors can find a solution quickly.

Six Months Old!

2010-04-24T10:03:00.003-05:00

Today is my 6 month birthday. I have come along quite a bit and can do new things every day.

I can now smile and have started to laugh. I like to follow things around, especially my daddy's face. I like reaching for things like my rings and will even play with my Mortimer the Moose. Reading is fun, but only when I am getting sleepy otherwise I want to look around and see everything. I love the feeling of the breeze on my face, makes me grin every time. The best part of my week is still bath time. I can't wait to go swimming.

I got to visit some of my favorite nurses at the hospital last week. Oh I missed them so much but am really happy to not have to hear those beeps anymore. It is kind of nice to have just my mommy do all the changing and cleaning up now.

I have done quite a bit these past six months and have some big plans for the next. I can't wait!

Little Light Reading

2010-04-21T21:11:00.003-05:00

Happy Spring Days

2010-04-14T11:37:00.005-05:00

Hello All,

Life here in Zoe's world is becoming more and more routine and seeing her grow and change each day is a joy. As of last Thursday Zoe was 9 lbs and 13 oz, finally out of newborn clothing.

We continue to work with Zoe on her milestones. We hope we can keep her on track with the help of her therapists. She is showing the beginnings of a purposeful smile and is working on that head control. All wonderful steps to be thankful for.

The next few weeks will be quiet ones as we have no major doctors' appointments, no complaints here.

We hope you all enjoy the spring weather wherever you are and thank you for continuing to keep us in your thoughts and prayers.

Kimberly

Passing the Proverbial Torch

2010-04-13T11:26:00.003-05:00

Today we pass the torch of ZAC's Blog to Kim. Keep us informed girl. We all still want to remain part of your lives.

- ZAC's GP

Post Easter Update

2010-04-06T08:01:00.002-05:00

We hope that everyone had a wonderful Easter. We felt especially joyful as we received some great news on Thursday.

We did finally get the results of Zoe's tests. The EEG found that there are currently no seizures. This is great, so hopefully her development will not be hindered by this.

Her blood tests also showed she did not have a bleeding disorder. So all great news and we are hopeful for what Zoe can do in the future.

Life continues on in the Casmer home. We look forward to warmer weather and being out and about. We are slowly lifting the quarantine and we should be soon making our way out in the world.

Have a blessed Spring,

Kimberly

Good Afternoon...

2010-03-30T14:51:00.001-05:00

Just chillin at the doctors...

All 9lbs, 9oz of me.

Love,

Zoe

Sleep Well...

2010-03-25T08:12:00.002-05:00

So, how was your week?

2010-03-18T14:56:00.002-05:00

Hi-

Well this week of appointments have Zoe and I completely worn out. Monday's eye appointment went well, her blood vessels have fully matured and the scar tissue is disappearing. This means that her eyeballs are healthy. We will not know for a while whether there is loss of the left peripheral vision since that is more to do with the brain.

The EEG on Wednesday, apart from being an hour long, was good. Zoe tolerated the electrodes being stuck to her head and once she was attached she just curled up in my arms and fell asleep. The only bad part of the visit was the confusion on the blood tests. There seemed to be a misunderstanding on what the doctor ordered versus what Zoe could give up. Four hours later we finally got started and had to listen to her very loud cries as the nurses tried to find good veins. Poor thing was poked 5 times but I was more upset and distraught than she was, Phil will be handling blood work in the future. We won't know the results for a while, once the neurologist gets them I am sure we will get a call. So we keep praying since that is all we can do.

Zoe did go on her first walk today. First time she was out of the house for leisure. The weather was too nice to pass up and bundled in her 'Moby' we took a nice 20 minute jaunt through the neighborhood. She seemed to enjoy it so much she fell asleep immediately. Well had to get it in before the fore casted snow on Saturday.

Kimberly

An Overdue Update

2010-03-08T07:58:00.002-06:00

Hello all,

It has been a couple of weeks since I have written but wanted to let you know how life in the Casmer home was.

We had quite a bit of an ordeal trying to get Zoe to eat and keep it down. With changes in formula, added medication, and rice cereal we hope to see Zoe gaining weight again. As of last week, Zoe was 7 lb & 3 oz and 20 inches, great numbers but according to the doctor not good enough. We hope with the recent diet changes we can see a drastic improvement at tomorrow's weigh in.

Zoe has a couple of important appointments coming up in the next few weeks. First, she has an eye appointment, to check if the vessels in her eyes have finally matured and hopefully were not damaged by the oxygen she was on while in the hospital. Second, Zoe will be going in for blood tests, urine tests, and an EEG to see what is going on with her brain. We are praying that things stabilize up there or heal. The tests will hopefully show what is currently going on, possible causes, and potential outcomes. All three are scary to think about so we continue to rely on the Lord.

Zoe's day to day seems great, when she is not spitting up like Old Faithful. We continue to exercise and do our therapy to keep her on track with her developmental milestones. March 11th will be her one month "corrected age" (age if she had been born to term). We hope to see things like, the startle reflex, gazing at faces for brief moments, and grasping on to fingers as a reflex.

We continue to be amazed by our little miracle and thankful for each day.

Kimberly

The Pediatric Neurologist's Report

2010-02-23T09:40:00.002-06:00

The pediatric neurologist visit was informative and seemed an overall positive. Based on the MRI we had a couple of weeks ago, the doctor thought there might be some 'fresh' inter-cranial bleeding. Zoe will be undergoing some tests in the next few weeks to see if there is a bleeding disorder. They are also going to check if she did indeed have a stroke, which is suspected to have caused this whole event. So we are praying that whatever the results, it can be fixed with little to no effect to Zoe.

When it comes to her growth and developments, as for now, she is on track. Only time will tell though where we will see the challenges she will face.

The areas for concern though are loss of vision in her left visual field. Basically she only only sees out of the right halves of both eyes. Because she won't know the difference, Zoe will learn how to compensate for this. The other concern is the brain's ability to take in images and understand what they mean. This one I had a hard time understanding, but the doctor explained it like this, "The inability to read the emotions of a face of a person that you see." Again, none of this is for sure, just things we will be watching out for... among many other things.

Positively he (the doctor) thought her frontal lobe (higher brain thinking, like math) seemed in good condition and the concern for the motor development should be there but not as dire as we once thought. Again though this was tempered with the fact that only Zoe can determine her outcome and based on her history and the current data that seems to be where we are at.

So we continue to pray that the Lord cares for Zoe and gives us all the strength and patience to handle whatever comes next.

Kimberly

My Week

2010-02-20T22:07:00.004-06:00

... nothing too exciting to update. I have a neurology appointment on Monday, the doctor wants to meet with Mom and Dad and me because of the abnormal MRI. (Well, abnormal in the sense that there is damage.) We expect it to just be informative and more tests, but as always mommy dreads these meetings and the rehashing of the potential outcomes. Well, just keep praying for that little brain of mine (and her peace of mind).

I am doing great on the weight gain front, 6 lb 14 oz on Thursday. They adjusted my feedings so they are not so heavy, but I am still a finicky eater. I bet they hope that these adjustments will help me with my gassiness, pooping and gruntieness. This seems to be my biggest challenge and really limits what Mom and Dad can do for now.

I hope you all are having a good weekend.

Zoe

Midweek Humor

2010-02-18T08:30:00.001-06:00

Our Second Week Home

2010-02-12T07:52:00.005-06:00

As Friday arrives, Week Two is coming to a close and we are slowly getting into the routine of parenthood.

As of today Zoe is now 6 lb and 8 oz. We seem to have a routine, at least when appointments don't interfere.

Zoe began her Physical and Occupational Therapy this week. Her assessment was great. Some milestones she is achieving or working on;
turning her head left to right and vice versa while on the tummy, grasping objects in her hand, and slowly working on sucking her fingers.

We will have to continue to keep up her exercises and therapy to keep her on track with her corrected age group. (Corrected Age: The age at which she would have been if she had been carried to term.) We have yet to get a good cry from her, but we hear that this is something we should enjoy while it lasts.

Well, have a great weekend.

Kimberly

An Eventful Week

2010-02-05T17:44:00.005-06:00

This first week has flown by, especially as we try to get used to Zoe's schedule.

We have been busy eating, exercising, reading, tummy timing and of course sleeping. Getting this into a 24 hour schedule is tough and then throw in the doctor appointments. Whew!

Also this week, we had our first pediatrician visit. The typical check up with the added task of handing over a medical history that is over 100 pages long. We also had an MRI on Thursday. Apart from being extremely loud, Zoe did very well and did not have to be sedated for it. Nothing surprising came from the MRI, damage to her brain is still there and thankfully the left side looks normal. We see a neurologist in March to get their perspective and possibly set up an EEG.

Zoe begins in-home Occupational and Physical Therapy next week. They will asses where she is at and provide the tools to keep on track with her developmental milestones. Zoe also gets two nurse visits a week, for a measurement check and general, "How are you doing?" So far, 6lb and 3 oz., 18 inches and grunty as ever.

We are still on lock-down at home, doing our best to keep the germs and viruses to a minimum. Lots of hand washing and antibacterial goop. The average preemie emergency room visit is 3 but I would like to avoid any since we have lived at the hospital for 100 days already.

Right now we are just getting ready for Grandma Casmer's visit and a quiet weekend.

What a blessing to be home finally.

Love to you all,

Kim, Phil and Zoe

And Phil Writes...

2010-02-02T07:53:00.003-06:00

"This is what Moses' basket would have looked like if he had been a girl."

Not so sure about that one, Pastor Casmer...but if it is indeed Moses, then I guess downloading a GPS app on that I-Phone is going to come in handy on that future trip through the desert.

In any event, ZAC sure looks comfortable in her new surroundings. Welcome home little girl. It has been a long, hard trip but you are home at last.

- ZAC's GP

Guess Who Got To Come Home Today

2010-02-01T18:47:00.005-06:00

"Mommy, I love my new car seat,

- And I love my new outfit,

- And I love the ride home,

- And I love my new house,

- And I love my new room,

- But most of all I love you and Daddy!"

Homecoming

2010-01-31T07:51:00.006-06:00

Just a quick note to all of you to report that ZAC's long hospital stay is coming to a close.

Zoe Ann Casmer is scheduled to be released on Monday, February 1st... wow, that's tomorrow!

All of us would like to thank the staff of WMH NICU, who have gone well above and beyond. They are caring and compassionate angels of mercy and flesh & blood examples of God's grace towards our family. You guys are GREAT! Thanks so very much.

As ZAC goes home and experiences new and interesting things... and faces new challenges, we continue to petition your prayers and praises, but we all also take this opportunity to thank you, the readers. You, who who have followed ZAC's story here and have stormed the Throne of Grace on her behalf have been just as instrumental in her developments as the NICU staff, so thank you too.

And now the 'fun' starts, but we have no illusions about the road ahead and it's potential hurdles... but we also are confident that His grace is sufficient. As for this weekend, we are staying at the hospital for the next few nights in order to ease the transition.

Love, Kimberly

Mommy, When Can I Come Home?

2010-01-27T09:13:00.005-06:00

Mommy, when can I come home?

I have been doing better these past few days and I really am trying to master the complex issues with swallowing, breathing and such... but it is hard for me. This is all so new!

I am doing much better now that I am being fed every four hours. The volume of milk per feeding isn't so large so I can take this lighter workload better. This is much more agreeable to me, rather than the heavier feeding. In the future, I promise to be a good eater, but for now 'slow and steady' seems the right way to go.

I am still at a good weight... 5 pound and 1/2 pounds! This is a long way from my starting weight... and it's all good weight too.

And while I may not be the tallest girl on the block, I am happy to say that I am 17 1/2 inches long! That's pretty good too when you consider my birth length. I think I have come a long way in a very short time.

... and that little 'trick' that I do when you try to feed me... you know the one. It's when I stick my tongue on the roof of my mouth and prevent you from giving me the bottle? I promise not to do that so much any more (well, maybe just once in a while, just to remind you who is the boss).

I really would like to come home next week... and if you have to bring all of this noisy monitoring equipment and this cumbersome oxygen setup (just for feedings, mind you) home too, well I guess that's okay. I just want to go home and see my room.

So mommy... when can I come home?

PS - That GP guy is super cool. I like him a lot!

ZAC

Dear Zoe…

2010-01-23T21:33:00.003-06:00

Or can I call you ZAC?

Today I got to hold you for the first time. It was an eye-opening experience. It had been quite a long time since I had held a baby as small as you and when you ‘factor in’ that we are family, well I was more than a little dumb struck with the memory of holding your mommy as I was holding you. I will admit that your road has been significantly harder than hers… but it will get easier, for both you and her… I promise you. And until then you are in real good hands.

I am not sure what Providence has in store for you...for that matter I am not sure of what Providence has in store for me either, but I look forward to enjoying the experience of getting to know you better.

I’ll wait while you work out all of the details...

...in your own time and in your own way.

Love Always,

Your GP

In case you were wondering...

2010-01-21T11:47:00.002-06:00

... Zoe is still doing quite well.

Yesterday she decided to take to the bottle again, which is of course, a great thing. The only down turn of events is that in order to regain this past milestone, she still needs the assistance of the canula for breathing. We tried doing both unassisted breathing and the bottle and that didn't work out as hoped... but maybe soon we can get her weaned off of the canula. Heck, she has come so far already! For now however, the bottle and the canula are a set.

In light of this 'hiccup', no official take home date has/can be been set, since the feeding has kind of delayed things... but we hope here too for that day to come soon. In the meantime I have been staying at the hospital many more hours per day, for the past few days, just trying to be more involved in her feedings and therapy. I must say that it has been great fun being around her more. A gal could get used to doing this full time!

Well, gotta run. I have 'mothering' to do.

Kimberly

What the Heck is Gavage?

2010-01-18T15:02:00.003-06:00

Well Zoe's fantastic Friday, stayed with Friday.

This past weekend she struggled quite a bit with eating and had to be gavaged - (http://en.wikipedia.org/wiki/Feeding_tube) for most of her meals. The nurses are trying various techniques and bottles, hoping that we can repeat Friday's success. Of course prayers are always welcome.

On an upbeat note, the doctor and nurses continue to monitor Zoe's electrolytes and sodium level, they were very happy the diuretic took so quickly, since this is something that usually takes a week.

Zoe had her first hearing screening, one of two before she is discharged, and her left ear seems good but the right one came back inconclusive. Once there is a second screening they can determine if we will need more appointments in the future.

We are thankful for each day that we have with her and the successes she has already had. What a blessed little girl we have.

Kimberly

Quick Update For the Weekend

2010-01-15T14:32:00.002-06:00

Zoe was taken off her canula this morning to see how she would do with breathing on her own. As of 1:30 she was still without any breathing assistance and even eating well while she is breathing on her own!

On the 'down side', she has lost a bit of weight over the past few days - the doctors attribute this to the use of the diuretic, but the doctor is increase her food intake so that she can gain some good weight.

Well, that's about it for this week...

Kimberly

Mid-Week Report

2010-01-13T12:04:00.003-06:00

All,

Zoe continues to do well. The doctor is working on weaning little Zoe off her nasal canula... and in order to help her, she is on a diuretic. This will remove any extra water from her body especially her lungs. They hope this will do the trick, but will closely monitor her to ensure she gains weight and her electrolytes stay where they need to be.

Zoe is still progressing with her eating. She will still have to take breaks through out the day, but most of her feedings have been by bottle. With the latest level of Zoe's development, the doctor feels that she may be going home now at the end of January! This is great but means mom and dad have a lot of work to get ready.

Kimberly

Baby's Steps

2010-01-11T07:44:00.003-06:00

All,

Today, Phil fed Zoe for the first time. She had one little 'purple episode' but she finished strong.

She continues to grow, 15 3/4 inches and 4 lbs, 14 oz. We are aiming at her hitting 5 pounds by Wednesday.

The doctor and nurses are working to wean Zoe off of the canula. They hope within a week she can be off.... We do too, so she doesn't have to come home on any breathing apparatus.

As another indication of her development, Zoe is no longer be under the care of the neonatologist, she has graduated up to her pediatrician. Just a another step to coming home.

We continue to give praise and thanks for the progress Zoe makes each day and the overwhelming response by strangers and friends alike that are praying for her. We pray that the Lord continues to bless Zoe with success.

Kimberly

Hey....

2010-01-07T19:34:00.009-06:00

Can't a girl get a little quiet-time? Now how about you turn off that light and let me get some sleep!

Good Night.

signed - ZAC

Counting Down

2010-01-07T13:43:00.003-06:00

Well...

Zoe had her ultrasound today and everything is remaining stable, which is great. The doctor's states that they will follow up with an MRI before her discharge date and in the future they will continue to monitor her brain and it's structural integrity.

We continue to pray and petition your prayers concerning the ramification of this injury. God has been very merciful with us already but we still ask for His grace and blessings for Zoe's future.

On the dietary front, Zoe has been eating well, five bottle feedings in a row as of last night! Her current weight is 4 lbs and 11 oz. and we hope in the next couple of days that we will get to start bottle feeding her instead of just being a spectator.

Zoe's breathing has been great too and she has had little to no alarms in the past week so they are going to slowly wean her off her nasal canula. We are praying here too, that this goes well.

In the meantime, we are just counting off the days until Zoe gets to come home!

Love,

Kimberly

Shots?

2010-01-05T07:26:00.003-06:00

Hello All,

A little 'Zoe Update' for today.

OT (Occupational Therapy) says bottle feeding and therapy are going well, however Zoe had her immunizations today... and she wasn't too happy about them... but neither would I be if two giant (respectively) needles were jabbed into my thighs.

Overall she had a pretty tiring day. She was pretty gassy too, so a lot of squirming. On a positive note, her weight is now 4lb. 8oz. and they will be stopping the protein additions to her feedings because they don't think she needs that supplement for her growth anymore. Hopefully that will help with the occasional gas issues.

Otherwise, her next head ultrasound is on Thursday - praying for stability there and God's great power to heal.

- Phil

1st Report of 2010

2010-01-02T13:37:00.002-06:00

... and Kim reports:

Zoe has now been moved to the 'Big Girl Crib'!

She is maintaining her body temperature very well and they have also moved her off of the High Flow Vent settings and is now just on a nasal canula.

Feedings are going well. She is bottle fed whenever she is awake and is still enjoying her gavage feedings if she takes too long or is asleep.

The doctors and staff are happy about the progress she has made and now are projecting a take home time of beginning of Feb.

Love,

Kimberly

A Trivia Question

2009-12-29T12:13:00.003-06:00

Riddle me this…”Who weighs four pounds and is painfully adorable?”

Well… the answer is ZAC – a.k.a Zoe Ann Casmer, who managed to hit the 4 lb milestone last night or as Kim so eloquently put it, “She is getting so big and all her cheeks are chubby!”

So what are the long range plans for Zoe, based on her achievement of this milestone? Well, the plan is that in a week or so she is to be moved to an open crib! She will still be monitored to ensure she can maintain body temperature, heart rate, breathing and such, but the constraints of the plastic box will be gone.

As for her feeding, Zoe is continues to do well with her nipple feedings and she has now graduated to bottle feedings twice a day. She is also being weaned off of her caffeine and air support over the next couple of weeks to see if she can "fly solo".

We are praying that the past few days will be a good indication that it will be successful and we invite all of you to join us in our prayers of thanks and praise for what He has done as well as our entreaties for His continued blessings on this child.

- ZAC’s GP

Kim Provides a Sunday Update

2009-12-27T08:28:00.005-06:00

Kim writes,

"Hello all and before you ask, 'How did the ultra-sound go', I'll be proactive and answer...It went alright.

The damaged areas of Zoe's brain continue to dissolve, but it seems that so far there is no clotting. (Which means no additional damage is being created). This is good because it means we can avoid having surgery to put in a reservoir and then later a shunt. So I guess the overall status - stable.

The past couple of days nipple feedings haven't been as good as they have been, but we figured this is due to her still learning.

... And if you live in the 'Great Midwest', I hope you are enjoying the snow.

Kimberly

HO! HO! HO!

2009-12-25T10:16:00.003-06:00

Editorial Comments Abound

2009-12-24T09:11:00.003-06:00

Hi all,

Hope things are well for everyone.

The nurses and doctors decided not to go with the continuous feed. Rather they just changed her 'High Flow' settings so she is getting more stimulation to help her breathe. (Editorial Comment: Those darn medical-types!)

With this being said Zoe is still on her once a day bottle feedings in order to work on that coordination and built up her strength and stamina. (Editorial Comment: Awesome!) Phil and I got to witness the bottle feeding exercise this morning. 20 minutes later, Zoe had finished the entire bottle! This sight was amazing, especially since the previous day she just got tired out so easily. The therapist and nurses were very excited about her development.

We hope (Editorial Comment: And pray!) that this continues, but know that this was a unique event (Editorial Comment: I disagree!) and working up to regular bottle feeds will still have its ups and downs. (Editorial Comment: I agree, but remain optimistic!) The holiday remains busy and quiet. (Editorial Comment: Just a bit of a contradiction there, Kim.)

Merry Christmas and Blessed New Year,

(Editorial Comment: ZAC's GP & GM say Merry Christmas too!)

Kimberly

An Evening Poem

2009-12-22T20:10:00.011-06:00

T’was tonight after dinner, when it rang through the house…
My cell phone was buzzing, so I shouldn't grouse.

Kim had called to say hi and to leave a report…
She was heading back out so she kept it quite short.

ZAC was still doing well, but her feedings ‘had issues’…
No drama, no tears, and for certain NO TISSUES!

The volume of food ZAC was made to intake…
Was stretching her stomach beyond what it could take.

Thus it was decided that for her own good…
Continuous feedings to happen it should.

Beyond this small hiccup, ZAC was still doing great…
Fourteen inches in length, three pounds six in her weight.

Kim was heading back up to see her dear child…
And I thought of another, quite meek and so mild.

So when hassle and haggard vex this holiday…
Find time for reflection, find time to pray.

Sleep well, little girl.

- ZAC’s GP

Dad says, "SHE CAN EAT!"

2009-12-21T10:45:00.003-06:00

All,

Just got a call from the hospital. The nurse said that she caught Zoe at a very calm but wakeful moment and so she decided to try the slow-flow nipple feeding.

She said that for about 15 mins Zoe drank about 5cc’s of breast-milk from the bottle. She did not spiral down in oxygen levels, which means she was sucking, swallowing, and still breathing.

Jenn (the nurse in NICU) was very happy about it. She said they will attempt to do that once a day until she’s a little bigger.

Praying for lots of big miracles, God also blesses us with little, wonderful ones too.

SHE CAN EAT!

Phil

Eighth Week Anniversary

2009-12-19T06:10:00.004-06:00

... And a cool new outfit.

Say, do animal prints make me look fat? I hope not. I want to look my best for my Eighth Week Anniversary.

Happy Eighth Week Anniversary to me... Happy Eighth Week Anniversary to me...

Have a great weekend everybody, because I will!

- ZAC (Okay, my GP helped me type this up.)

Be Still

2009-12-17T12:08:00.002-06:00

"Be still, and know that I am God; I will be exalted among the nations, I will be exalted in the earth." - Psalm 46:10

Zoe achieved the 3 lbs and 1 oz milestone last night.

For us, there will be lots of prayers still...

And lots of hope for the next months and years.

- Kim

The Specific Reason…

2009-12-16T11:19:00.003-06:00

Yesterday’s post contained few specifics as to what the concerns of the doctors and the staff of WMH NICU were. This was done on Kim and Phil’s request in order to contact and inform the family rather than have them hear about it here ‘first’. Since this is now done, perhaps a bit more of an explanation, concerning Zoe’s condition is in order. I preface this explanation with a simple statement from Kim, “Just praying for a miracle right now.”

The MRI of Zoe’s head indicated that the right ventricles of the brain were growing. This could have been caused by swelling of the brain or perhaps bleeding, but it was not. Instead, what the ‘second opinion’ revealed was that there were large areas of damaged brain tissue in ZAC’s right brain hemisphere which her body was reabsorbing. The space created by this absorption was being filled with cerebral fluid.

The cause for concern surrounding this development was not so much about the absorption or the fluids, but rather the potential for long term damage already having been done that would cause the brain to go into this ‘mode’. The doctors theorize that while in uterus, Zoe may have experience a stroke which both damaged the brain and spurred her premature arrival.

Following the MRI review, the doctors… cautious as always in the choice of words they used, painted a picture that spanned the distance from stark and bleak in outlook [as it applies to the potential from long term disability and brain damage] to the possibility that Zoe might be able to ‘reprogram’ her brain so that the functions performed by the damaged/missing area could be taken over by the other hemisphere, and thus be ‘normal’. [I question the relative merits of normalcy, but that debate is best kept for another day.]

The next milestone is finding out if Zoe can coordinate the suck, swallow and breathe regimen, a function that should be ‘second nature’ by the baby’s 36th week of development. Since ZAC is only at 30 weeks of development there is still time to go on this, and beyond this new hurdle she continues to grow, breathe, her heart is strong and she is active.

On a personal note, after speaking to Kim at length last night, I can only reiterate what I said then. Understanding the will of God is often clouded from the minds of mortals. I would not begin to hazard a guess as to why this has happened to Kim and Phil and Zoe… to all of us, but suffice it to say that regardless of the end result, it will be to His glory.

If Zoe does indeed have to contend with brain damage, Phil and Kim will be most excellent parents, Zoe will remain a child of God and He will be glorified.

And if Zoe has to contend with a limited disability or a learning complication,
Phil and Kim will be most excellent parents, Zoe will remain a child of God and He will be glorified.

And if He allows Zoe to develop, grow and thrive… unhindered by any disability,Phil and Kim will be most excellent parents, Zoe will remain a child of God and He will be glorified.

If He chooses any option other than the third, will He be less glorified? I think not, and while we would pray and plead with Him for this third option to be His option of choice, it must always be remembered what He said to Paul…

"My grace is sufficient for you, for my power is made perfect in weakness."

- ZAC’s GP