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