A Bruised Reed

A bruised reed He will not break, and smoking flax He will not quench

September Randomness September 29, 2008

Filed under: Hannah,Josiah — Jennifer @ 6:29 pm

I thought I would dedicate a post every month to random bits and pieces about our kids… just in case anyone is interested in these sorts of things!

Fun Things They Do

Hannah likes to walk around the apartment with socks on her hands.

Josiah likes to make silly noises… he has earned the nickname “dragon baby” because they sound like noises that I would imagine a baby dragon might make.

Friends They Have

Hannah enjoys the company of older kids… although her best friends are two boys from church who live nearby. She has spent many hours at their house during Josiah’s clinic appointments.

Josiah enjoys everyone!

Their Favorite Things to Do

Hannah enjoys life in general! She loves singing (and is quite good at carrying a tune) reading, playing with her Little People, watching Toy Story, and playing with Daddy. And for some reason, she love planes, trains and… semi-trucks (!?)

Josiah also loves spending time with Daddy… for some reason Daddy is capable of making Josiah laugh in a way that Mommy can’t. His new favorite toy to play with is a ball, but he will enthusiastically play with pretty much anything – this guy is easy to please!

Foods They Love

Hannah has two food groups… dairy and carbs. I’m afraid she’s out of luck if she decides to go on a diet someday.

Josiah will eat anything I put in his mouth. His favorite is sweet potatoes (one of mine, also!)

What They are Learning

Hannah has been working on her vocabulary. The latest phrases have been “oh cool,” “oh neat” and “okay.” (I think we have a theme here.) She has also been learning about animals and colors.

Josiah is still trying to learn to roll over. He hates being on his tummy, so he has no reason to want to roll over! Unfortunately, that doesn’t help with strengthening his shoulder muscles for crawling… He has learned to sit, and is quite stable on his own – he loves the independence that it gives him!

Things Mommy Loves

Hannah is so cheerful, and a great sleeper. If she’s asked if she wants to take a nap or got to bed, she will enthusiastically respond “yeeeeesssssss!” How great is that??

Mommy loves Josiah’s full-belly laugh and open-mouth kisses!

(I’m adding photos from our day at the Walworth County Fair in Elkhorn Wisconsin earlier this month)

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Autumn is Here! September 23, 2008

Filed under: Faith,Hannah,Josiah — Jennifer @ 6:24 pm

While many are lamenting the passing of summer, I am rejoicing in the coming of fall. I love the deep colours and aromas… pumpkins and apples… Thanksgiving and corn candy… this is my favourite time of year!

We have had such a busy summer – I’m not sure where the last three months have gone. We started off with a visit to Casey’s parents in North Carolina, and continued traveling with many short trips within Illinois, Wisconsin and Michigan to visit family and for Casey to fill pulpit in various churches.

Casey accepted a position working in the warehouse at InterVarsity Press. It is close to our house, and he enjoys many aspects of this job. The flexibility of clock-in/clock-out times will give him opportunity to prepare for his final seminary exams this winter.

Hannah is really starting to become a little person – it is both amazing and fun to see her grow and develop. We have spent a lot of time out walking around our neighborhood. On our walks, she enjoys our regular break to sit on some large rocks at one driveway entry, and she searches for cats, dogs and airplanes… and sticks. One neighborhood man calls her “the stick girl.” When we’re not out for a walk or visiting the zoo (we are about five minutes from the wonderful Brookfield zoo – if anyone cares to visit us!) she enjoys reading, doing puzzles and playing with Josiah.

Josiah is also growing so quickly. I can’t believe that he is eight months! He is catching up to his sister in weight, as well as height. He has recently developed a love for balls, and baby biscuits… thankfully, he is beginning to sit up on his own, so he is able to manage some of this play time on his own (or with the help of his sister! lol)

Josiah had several major tests done about two weeks ago, and at the evaluation meetings, the specialists expressed concerns over what they see to be deterioration in his condition. The previous set of tests showed that he had fluid building up in his spinal column… putting pressure on nerves that are tied in to his feet and bowel/bladder system. This is obviously of concern because of the deterioration that they are seeing. Two doctors were very forward in telling me that Josiah is one of the top kids on their worry list right now.

The fluid that is building up in his spine is the same fluid building up in his head – this is showing that his body is not properly circulating this fluid. In many cases, the surgeon would choose to place a shunt in the brain to drain this fluid. But Josiah’s surgeon is searching for any excuse she can find not to put in a shunt, partially because of the fact that he is showing none of the “classic” signs of hydrocephalus problems, and also because his recent MRI showed to her that his brain is very alive and, in her words “looks beautiful.”

Placing a shunt in Josiah’s brain would be opening the door for so many future surgeries and health issues – the surgeon is trying to find signs of hope that he may not need one. One thing that has been considered is the fact that Josiah’s physical therapist has been away for over ten weeks. That may be the explanation for the deterioration that they see in his lower body.

On Thursday, I will be taking him in to Children’s Memorial for two more tests – a vision test and a quick head MRI. If the surgeon feels that he can be considered in stable condition, she will give him three months to improve, with follow-up tests in December. If those tests come back with further deterioration, he will be going in for surgery.

On the other hand, if the tests on Thursday come back showing his condition as unstable, he will require surgery soon. But, again, the surgeon does not want to give him a shunt just yet. If he needs surgery now, she will be releasing his spinal cord from scar tissue, draining the pocket of fluid in his spine, and draining some of the fluid from his brain… giving his body a second chance to learn how to process this excess fluid on its own.

We would like to ask for prayers as we are near having to make a very serious decision regarding his situation… I am quite nervous about the upcoming tests, and can’t help but worry over how things will work out if he has to go in for surgery again. I know that he will be in good hands at Children’s, I have little worry over where we will stay or what we will eat (we love the Ronald McDonald house!) – but I do worry about things like care for Hannah, how long he will be in the hospital, what “unexpected” situations may pop up as a result of surgery, how much Casey will be able to be with us…

I need to remind myself that the Lord cared for us in unexpected ways in January… that he has and will continue to do so… but in my struggle with the sin of unbelief, it can be so hard to remember this! I have been very encouraged by sermons and Sunday school lessons recently. They seem to be so appropriate for the struggles I have been facing. I am so thankful to be part of such a wonderful church, where the Word of the Lord is proclaimed, and the fellowship of the saints has been sweet!

 

Spring Has Sprung April 7, 2008

Filed under: Josiah — Jennifer @ 8:34 pm

Spring is here, and we are thankful for many opportunities to venture outdoors. I think all of us were reaching the point of becoming stir-crazy… and, at least for myself, I think it went beyond that point! (Mommy only has so much hair to pull out, after all! lol)

This past week has been very busy. Josiah had clinic appointments with the staff from Children’s Memorial Hospital in Chicago on Tuesday. As we drove in to Lincoln Park on Lakeshore Drive, the view over the lake was stunning. It took my breath away.

Anyhow – every Tuesday, the specialists who work with spina bifida patients gather at one location to offer outpatient services for children with spina bifida. It is a wonderful idea, as the number of appointments scheduled can be overwhelming. This past week, Josiah was scheduled to meet with the neurosurgeon and the urologist, and to have a head ultrasound, bladder ultrasound, and another bladder test (which, alone, took 1- 1/2 hours to complete.) In the middle of this chaotic day (of course, nothing happens as scheduled because nobody shows up on time…) we were whisked in to see the orthopedic surgeon, and then off to another specialist in orthotics to have new braces made. Once the day was through, and I had successfully exhibited my newfound “city driver” abilities by pushing my way through rush hour crowds and traffic, I was able to catch my breath and consider the results of the tests and meetings. All things considered, I think that everything went quite well.

The hydrocephalus has been labeled “stable” at this point. We are so thankful for that! We pray that it will continue that way, although we do realize that things could change at any point over the next couple of years.

The urologist is continuing to monitor his bladder and kidney condition. She has been watching it closely, and said that it appears to have improved somewhat, probably because of the medication that he has been on. Because he requires regular catheterizing, he is at high risk for urinary tract infection (UTI). On Saturday, I noticed a few things that could be signs of a UTI, and then, yesterday, at church, I realized that he had developed an infection. Because of his situation, it is important to get immediate medical attention for this sort of thing. So I spent 6 hours in the emergency room with him – fending off anyone who dared to come near us with a pair of latex gloves (another spina bifida issue is latex allergy.)

But, even with the medical struggles, I cannot believe how normal our supposed-to-be-handicapped son is. Unless you were told that he has spina bifida, you would never know! He is very active, has already doubled his weight (now 12.4) and is starting to interact by smiling and “talking.” The neurosurgeon has called him a little show-off, and a nurse at the ER yesterday said that “he certainly doesn’t act like the typical hydrocephalus baby.” I was very encouraged.

He is sleeping well. Much like Hannah, he seems to prefer a regular bedtime, and sleeps for 6 to 8 hours at night. (woo-hoo!)

And we all love him to death. Especially his sister.