Christmas and Zoe

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!

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

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

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?

First Cold/Croup

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

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

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

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

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

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!

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

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?

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

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

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

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

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

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

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

Not Sure What to Title This One

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

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

Have a Happy Labor Day

Ten Months Old

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

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

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

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

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

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)

I Am Exhausted!

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!

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

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...

Swallow Study

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

So 2 Out of 3 Isn't Too Bad

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

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

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

Awake for a Little Bit

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

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

Oh the Specialists We See

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"

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

Another Check Up

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!

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