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.