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

Happy Spring Days

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

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

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...

Just chillin at the doctors...

All 9lbs, 9oz of me.

Love,

Zoe

Sleep Well...

So, how was your week?

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

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

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

... 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

Our Second Week Home

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