Hannah and Josiah’s Summer July 9, 2008

I must apologize to you all for neglecting my blog. I can’t believe how fast the year has been flying by – I think it’s been about 4 months since I’ve done this.

We have all been quite busy with normal daily activities, as well as special appointments and outings. We went on vacation to North Carolina in June, and enjoyed several days on Myrtle Beach!

Casey finished his ten-month internship at our church the end of May. It was such a wonderful opportunity for him to learn, and become involved in the long-term routine of a congregation. Summer internships seem to be more intense because of the short length of time you are with the hosting church. We have enjoyed our stays with three separate churches now. Each experience has been unique, we have come away from all of them with new friends! Casey is currently looking for a job in our area… several opportunities have come up with Christian companies and organizations. We are at a point of major decision-making, and would appreciate prayers for wisdom as Casey considers our situation and future. Entering the ministry is a decision that must not be made lightly, and we want to make sure that we are ready for that personally, and as a family.

Hannah is her usual cheerful and independent self. It is so much fun to see her beginning to pretend and imagine in her play. She loves singing, much to the amusement of others in the congregation when she very loudly joins in during the hymns.  About two weeks ago, she kept trying to sing something, and we finally realized that she was trying to sing the threefold amen that we sing every Lord’s Day at the end of worship. It is her new favorite song, closely followed by the alphabet song, Old McDonald and Jesus Loves Me. She is quite fond of taking walks, so we try to go to the park down the street on a regular basis. During those walks, she is usually seen carrying a couple of sticks – great toys! – and  looking for puppies. She seems to have a fairly good vocabulary… although she chooses not to use it, which can be very frustrating! We were thrilled when she chose Father’s Day to start saying “daddy.” She can be quite a challenge at times, although I feel like we may be developing an understanding of how things work in this mother-child relationship. There are many days when I must rebuke myself for being so short tempered with her. Having a child has forced me to face some of my own shortcomings!

Josiah is growing so fast… looking at photos of his first few days, I can’t believe how tiny he was. He is the happiest baby, and very seldom cries. When he laughs and smiles, his entire face lights up, and he wiggles, grabbing at whatever he can get – including my glasses and hair. I was thrilled when he began rolling over last week, and a therapist had him sitting by himself for a couple of seconds (rather awkwardly!) Our normal routine involves some extra care. He was able to switch from the bottle to nursing, which has been absolutely wonderful because of the work that was involved with feeding him via bottle. So, our extra care is now mostly in the areas of diaper changes, therapy exercises and doctor’s appointments. He still has some major concerns in the urology department, and I have switched to doing his catheter every two hours in an attempt to prevent any long-term damage to his bladder and kidneys. This has been difficult to adjust to – each time takes about fifteen minutes, and I have to stay with him until his bladder is empty. We have two therapists who make home visits once a week for an hour each. They have been very encouraging, and I am thankful to have have access to this service. They are always watching for subtle changes in Josiah’s abilities that could alert us to potential problems. And we are still seeing the specialists at Children’s Memorial on a regular basis. Two weeks ago, Josiah had an ultrasound, a bladder test and two MRIs. It was hard for me to watch him recover from the MRIs… the process for that is to put him under general anesthesia, with IV, breathing tube, etc. And on top of it… he wasn’t allowed to eat for nine hours. Poor guy. I really felt bad for him. I have not yet visited with the neurosurgeon for the MRI follow-up, although I did meet with the urologist, and she did tell me that there are some problems that are showing up on the MRI report. The main concern is something called hydromyelia. It is a build up of cerebral spinal fluid (csf) in the lower part of his spine. Much like the hydrocephalus in his head. The urologist was not able to give me much information, other than that is may be linked to something called tethered-cord syndrome. As a physically-normal child grows, the end of the spinal cord moves up the spinal column. In cases of spinal repair surgery, the cord can become attached to scar tissue. As the child grows, the cord cannot move up, and, instead, it stretches. This can cause pain, nerve and vein damage, and, in some cases, severe curving of the spine. If this is the case for Josiah, they may decide to do surgery to release his spinal cord, which (I’m assuming) would allow the csf to begin flowing normally. There are other things involved for Josiah – he appears to have lost some of the movement in his feet, and (as I mentioned) his bladder situation is getting worse. These things are linked to tethered cord because of the nerves that are involved. So, as much as we are worried about the possibility that he may need another surgery, we are thankful that they found this early (presuming that it is tethered cord syndrome.) My initial concern was that he needed to have a shunt put in to resolve this, and, while he may need that eventually, I am beginning to think that this is a different situation.

We are so thankful for how the Lord has provided for us, and would ask for prayers for us as we make choices for our family, as well as for Josiah’s continuing medical needs. It has been hard for us to think about the possibility him having to return to the hospital for surgery. I tend to focus on too many details, and need to remember that we have been in this situation before, and the Lord provided for us in ways that we couldn’t imagine!

(The far right photograph is of Josiah with Great Great Grandpa Swets – the rest were taken during our vacation)

A Little Man April 26, 2008

And this boy doesn’t want to stay little, either! He is really beginning to interact with those around him, and enjoys looking at toys. He has developmental therapy once a month, and physical and occupational therapies once a week. (all done in our apartment, thankfully!)) The picture of him on the big ball was from this week’s therapy session. He loved it! Having him on the ball for therapy allows us to easily shift his balance, so that it is easier for him to use his upper body, encouraging him to use and strengthen those muscles. The therapists are working hard to show us how to encourage his muscle development in certain areas to prevent future issues – some minor, and some more serious, like scoliosis and tethered cord.

Josiah was back in the ER this week with another UTI. After doing some troubleshooting, it looks as though the doctors have a possible solution for us – or, at least, preventative measures that can be taken. The staff at Children’s is absolutely amazing. When it comes to choosing an ER, they are well worth the extra driving time. We had a couple of ladies specifically come to check on us because they were familiar with Josiah, and they wanted to make sure that everything was going okay. They are great with kid and parents!

Daddy’s Girl April 26, 2008

I think someone looks like her daddy. Curly hair and all. (Daddy’s picture is the one with the blue background.)

(For those who know as little about computers as I do – you can click on a picture once to select it, and when that is done, click on it again to enlarge the photo. I know, some of you are probably laughing at me right now – *you know who you are* – but… I know some of you are thanking me.)

Causing Trouble April 26, 2008

As promised, I am finally adding pictures…

This little girl is quite the opinionated little lady. She has grown and changed so quickly – it’s amazing how fast she learns new things. Her latest has been to rather loudly proclaim “eeeeeww” when walking past the toilet or looking at her dirty feet (she and I both prefer to go barefoot!) She has also added “uh oh” to her vocabulary.

Some days are quite challenging, but – after a battle of the wills – I’m not sure who really wins… she’s too cute for me to stay angry with. And then there are so many things that she is so very good about. She never cries when I put in her bed. After reading a Bible story and rocking for a few minutes, we go to the bedroom to say her nighttime prayer, and after a kiss, I put her in bed with Blankie. Tonight, the only thing out of her mouth was a “bye,” muffled by a pacifier and accompanied by a sweet little wave of the hand. Awwwww… it makes me choke up, just thinking about it.

Whate’er My God Ordains Is Right April 19, 2008

Whate’er my God ordains is right:
His holy will abideth;
I will be still whate’er He doth;
And follow where He guideth;
He is my God; though dark my road,
He holds me that I shall not fall:
Wherefore to Him I leave it all.

Whate’er my God ordains is right:
He never will deceive me;
He leads me by the proper path:
I know He will not leave me.
I take, content, what He hath sent;
His hand can turn my griefs away,
And patiently I wait His day.

Whate’er my God ordains is right:
Though now this cup, in drinking,
May bitter seem to my faint heart,
I take it, all unshrinking.
My God is true; each morn anew
Sweet comfort yet shall fill my heart,
And pain and sorrow shall depart.

Whate’er my God ordains is right:
Here shall my stand be taken;
Though sorrow, need, or death be mine,
Yet I am not forsaken.
My Father’s care is round me there;
He holds me that I shall not fall:
And so to Him I leave it all.

http://www.cyberhymnal.org/htm/w/h/a/whateerm.htm

Trinity Hymnal #108

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Oprah’s Theology April 14, 2008

Wow. I don’t watch Oprah, but I find the cult-like craze over everything surrounding her rather disturbing. This video is proof. Oprah is not a Christian. Oprah does not know God. Oprah is leading many down a path that will not lead to eternal life, but eternal judgment.

http://paradiseregained.wordpress.com/2008/04/14/americas-most-influential-preacher/

Here’s To… April 10, 2008

The World’s Coolest Stroller. Without you – it would be almost impossible to venture out of the apartment. Thanks.

http://www.philandteds.com/nz/sport_07_1.htm

(It seemed inappropriate to waste a good bottle of wine toasting an inanimate object. I figured the least I could do was put in a shameless plug for this company. And Craigslist. And Grandma. )

Hannah…Meet Coffeetable April 9, 2008

Yesterday I learned that I cannot protect my child at all times – no matter how hard I try. Sometimes she just has to learn things the hard (and even painful!) way.

Hannah was ready for bed. And while I was tending to her brother and talking on the phone, I looked up just in time to see her trip and land with the corner of the coffee table right between her eyebrows. Of course, I wondered what permanent damage this would do to my child’s brain and (oh the vanity of this concern) her physical appearance.

She is fine – I kept her up for a while to be sure that there were no signs of a concussion, and this morning she woke up with just a small lump and light bruise.

But this incident caused me to reflect on the subject of beauty, vanity, and our culture’s influence on what we see as our “self-esteem/image.” And how twisted this subject has become thanks to American media, marketing… and our own sinful natures.

Not a day goes by that we aren’t bombarded by what has become pornography labeled “free speech.” Turn to any department store ad, walk through any shopping mall, turn on a soap opera or sitcom. Why does our culture shun illegal pornography, and accept – even applaud – all of these other things?

Perhaps it has become what defines us, giving us some goal to strive toward in our search for beauty or perfection. Either way, we have come to accept our bodies as what we are, as the essence of our being. It is no wonder we spend so much time and money attempting to perfect our physical appearance – the part of us that will return to dust. It’s, sadly, quite ironic.

Or, perhaps, our shunning of illegal pornography and acceptance of this “free speech” is the attempt of fallen man to follow the letter of some law that does not require a searching of the heart. We all want to be able to say that we are good, without having to search our hearts. The Law of the Lord requires that we not only follow the letter of the Law, but also the spirit.

Applied in this situation, being legal by American, man-made law doesn’t make something right. Following the spirit of the Laws “Thou shalt not commit adultery,” “Thou shalt not covet,” etc… would require that we carefully consider our views on these things.

When faced with this reality, its no wonder that fallen man hates the Law of the Lord. Its easier to follow the laws of men.

I don’t typically listen to Focus on the Family, but I did hear a snippet of a broadcast this week where Dr. Dobson mentioned how “unfair” it seemed when, after an incident with his daughter similar to that of ours last night, people no longer turned to notice and comment on his daughter’s appearance. He mentioned how we often hear “what a pretty baby,” or warnings to a father about having to fend off the boys when his daughter gets a little bit older. We say these things without even thinking. Beauty, and our obsession with it, becomes ingrained in our children’s minds from the moment they enter this world.

It seems as though little Hannah receives more than her fair share of beauty-focused comments every time we leave home. When I hear them, my initial reaction is pride (a topic for discussion in and of itself.) After pride, I feel some embarrassment over all of the attention. And then, as a mother and a Believer, I become afraid. Afraid of how this unhealthy level of attention to her physical appearance will affect her. Even, at times, wishing that my child were not so “cute.” Will she become proud? Vain? Could these traits, encouraged by the comments of strangers who mean well, actually do spiritual harm?

I don’t know. But after considering my fears, I must accept the fact that I have no control over these things, just as I had no control over the coffee table incident. I must trust that the Lord will protect my child not only in every-day life, but also in matters of pride… only the Lord can humble a heart that is, by its very nature, full of pride.

So, as the Mommy in me releases a sigh of relief, the Believer in me does as well.

Spring Has Sprung April 7, 2008

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.

Josiah Discharged and Home With Us February 14, 2008

We are excited to let you all know that Josiah came home on Tuesday night.  His discharge was somewhat sudden, although we had been told to expect it sometime during the early part of the week.  He is doing very well, according to the doctors and nurses.  The stitches in his back were removed on Tuesday morning — the incision has healed nicely.

Our challenge now is to adjust to his care routine.  Every three hours he is fed (the milk has to be thickened because of feeding problems), we change his diaper, do his catheter, and alternate time with his braces off and then on.  We also have a list of things to monitor — warning signals that will indicate additional fluid up in his brain.  The surgeon told us that as long as there continues to be no need for a shunt, we can expect to have to monitor things closely until he is two.  After that point, it would be unlikely that the hydrocephalus would build up and require a shunt.  We will be going to the hospital for regular check-ups and tests for at least the next couple of years, right now on a weekly basis.

He is such a happy, content baby — he very seldom complains about anything and spends a lot of time sleeping.  Hannah seems completely unphased by his presence, and hasn’t seemed too interested in what’s going on, except for when he peeps up once in a while — and she has taken an interest in his pacifier!

Again — thank you all for your prayers, cards, phone calls, e-mails, etc.  We’re particularly thankful for Casey’s mom (Betty) who has stayed with us for an extended period time to help with housework and taking care of Hannah (quite a handful!) — we don’t know what we would have done without her being with us.  The Lord has continued to give us strength through this time of new challenges and responsibilities, and we’re thankful that he cares for his little child Josiah and even now has his loving and wise hand upon him.