Update January 21, 2009

I apologize for the delay in posting an update on Josiah. The last few weeks have been unbelievably busy, and as I was thinking yesterday, I realized that it has been almost three weeks since surgery!

The surgery went safely (as I’m sure most of you have already heard.) We are so thankful!! Josiah was able to come home the next day… I was apprehensive about it, but it was for the best, as we were not able to get quality sleep in a hospital room with several other children. Within a couple of days after discharge from the hospital, he began to have flu-like symptoms. Hannah and I had the flu over Christmas, so my instinct told me that it was the flu. But red flags went up because signs of problems with hydrocephalus are almost identical to signs of flu. So, following the recommendation of the surgeon’s nurse, we made a trip into the emergency room at Children’s on Monday (the 5th.) It did turn out to be the flu, thankfully!

The following Monday (the 12th) he had an MRI, and then an appointment with the surgeon on Tuesday. She did note some changes in his head, and when I asked some more detailed questions about what his body might be doing, her answer was to shrug her shoulders and whisper “I don’t know.” We are not extremely concerned about her response on one hand, but on the other, it is hard to wonder about how things will progress. The surgeon has a motto of allowing the child’s body (through tests) to dictate what is done next, rather than following a “cookie cutter” plan. While spina bifida patients have many of the same problems, no two cases are alike – the neurological system is so sensitive, and every body learns to “re-wire” itself in a different way.

So we are, once again, waiting. Josiah is scheduled for another MRI and consultation the end of February. I would like to say that we will have answers at that point, but, most likely, we will either find out that a shunt is needed, or that we will have watch and wait longer.

Josiah continues with a full schedule of therapy sessions – we are looking forward to adding speech therapy, as well as an additional session of occupational therapy every week. More equipment and supplies are making their way into our home… we will be picking up his standing frame in a few days. I’m so excited about this! And we were able to increase and change our monthly catheter orders, with the hope that it will help reduce the risk of bladder infections.

Hannah has been such a helper around the house, learning to pick up her toys and make her bed. Even washing her crayon “artwork” off of the wall and floor a couple of days ago! 😉 She has so much fun being a big sister.

Again, I’m so sorry for not posting this sooner – the last few weeks have evaporated rather quickly. Please continue to pray for Josiah’s health. He has been consistently struggling with various bugs since surgery. His current cough and congestion are rather unpleasant – I would love to see him feeling 100% again.

Surgery December 19, 2008

We would like to thank you all for your faithful prayers, notes of encouragement, phone calls, etc. The last few weeks – and months – have been frustrating, and our appointment with Josiah’s neurosurgeon yesterday brought some of the waiting to an end.

The reports from his urologist and orthopaedic surgeon came back with notes of improvement in several areas. We were very glad to hear that, and know that the extra time spent in physical therapy has indeed helped. The therapist who administered his muscle test made it very clear that, while the improved test results may not look like much on paper, she was very happy with how well he was doing overall. She noted that he seemed to have more control and awareness.

While Josiah’s neurosurgeon was pleased to hear that there were some improvements in testing, she was quite unhappy with his head measurement. It, once again, went nearly straight up from the last one. On chart, his head measurement is that of a three year old. (I have noticed this at home – putting his shirts on can be quite a challenge!) In addition to the concern over head measurements, she is seeing other subtle signs that are concerning, and she is hoping that surgery might give him the little bit of help that he needs to move forward in many areas – both physically and mentally. She made it very clear that the ultimate choice in what to do is ours, but that she strongly recommends that we intervene.

Our options would be to either refuse to intervene, place a shunt, or do what is called a third ventriculostomy. The goal of this surgery is to pierce the lower membrane of the third ventricle, to allow the fluid to be absorbed by another part of the brain. We have chosen this option. Brain surgery. Even thinking of those two words seems so surreal. I think that, between the reality of what we’re facing and the lack of sleep that we are dealing with, both Casey and I are feeling pretty numb right now. It’s difficult to function. There is risk involved with this surgery… there is a major artery right below this membrane… if it is damaged, the consequences could be very severe – even deadly. You may be thinking “why not go with the shunt?” I think the surgeon summed it up very clearly. The risk of death or serious harm is immediate with the ventriculostomy, lifelong with the shunt. When living with a shunt, the concern of shunt malfunction or failure is an everyday fact of life, also with serious or deadly consequences. Most children have 2 or 3 revisions (replacements.) Our surgeon knows of one patient who had 50. If the ventriculostomy is successful, Josiah may never need further treatment for his hydrocephalus. (I say “may” because we have learned that nothing is “for sure” in the world of a spina bifida patient.)

The surgery date has been set for January 2, barring any health problems. And if all goes well, Josiah should be able to come home within a day or two. (I was shocked to hear that!) If, during the surgery, the surgeon becomes concerned that the procedure may be too risky (or if, over time, it looks as though it failed) a shunt will be placed as our “plan b.” We are thankful to have an opportunity to try an alternative first, but are aware that a shunt is a wonderful medical device that has many benefits.

So – in an odd way, I am almost relieved. The endless waiting is over. I felt like I was standing on the edge of a river, ready fall in, but hoping that my toes might be able to keep me balanced on the bank. Now I’m in the water… the panic over falling is over, and now I need to concern myself with swimming. That may sound silly, but I think it’s a good description of how I’m feeling right now. And numb… but hey – a good mountain stream is usually pretty cold at this time of the year. 🙂

Thank you again for your outpouring of concern. With all that we have been through over the last eighteen months, and the visible “love of the brethren” that has help us through… I have come to see, in a very tangible way, the family that I have in the Body of Christ. It is an amazing and beautiful thing that I am very humbled by!

A Request for Prayers November 12, 2008

The last week has been very challenging, and somewhat discouraging. Josiah’s neurosurgeon has given us an “ultimatum” of sorts…

She is extremely pleased with his progress in all areas but his head size. It is becoming evident that his body is not learning how to process the excess fluid, as it is continuing to build up, causing his head measurements to skyrocket. Even more baffling is the fact that he is showing absolutely no signs of problems. In most cases, children will become irritable, sleepy and nauseous. There are also physical signs, such as eye problems and hardened soft spots (in infants.) The only thing we see is his head growing.

We know that the surgeon is desperately trying to avoid surgery, but is becoming convinced that we may have no choice.

A number of appointments are scheduled for next month. I’m listing them here, but the explanations may be too descriptive for the faint of heart. 😉

December 1 – MRI of the head and spine. He is sedated for this, as it usually takes about 1.5 hours. He has had this particular MRI done once before, and I found myself in tears, watching him wake up and recover from sedation. I know that it’s not painful, but it is unpleasant, because of the “recovery.”

December 4 – MMT is a muscle test… no pain, just a bunch of noisy therapists who try to grade his muscle movement. I guess that they seem to think that the more noise they make, the better his test results! lol I usually end up with a headache.

Renal Ultrasound to check the urinary system (mostly kidneys.) Painless. Unless cold gel = pain!

CMG. A long test for the bladder. His bladder is emptied by catheter, and it is then slowly filled with a dyed saline solution. He is hooked to monitors, and we watch for fluid leaking around the catheter to show that his bladder is as full as it will get. The end result is several charts showing pressures within his bladder. This will tell the urologist what sort of pressures his bladder will accept, and how it handles them. He usually sleeps through this test, although he becomes uncomfortable as his bladder fills, and often wakes up because of it.

December 16 – appointments with Neurosurgery, Urology and Orthopedics. (He will also be measured for a standing frame and “normal” braces on this day… steps to learning to stand by himself!)

The surgeon will review the results from these tests, and base her decision on them and his head size. If surgery is necessary, it would probably be to place a shunt in his head to drain the fluid, although we intend to ask if there may be another option that we could try before a shunt. Once a shunt is in, he will always need it… the mortality rates go up 30%… we are very concerned. I asked her how soon surgery could take place, and she tried to avoid giving me an answer – when I pressed her, she suggested the possibility he could go in the day after we meet with her – December 17th.

So, we would like to ask for prayers over the next month… that Josiah’s head measurement would level out, and that the test results would come back showing that that his various conditions are stable. As well as for our strength in this all. Unfortunately, this possibility of surgery, once again, falls right during an important and difficult time of the school year.

We do have moments of excitement, when small things become the highlight of my day. Something as simple as the flicker of a toe. I hadn’t seen that toe flicker for a very long time – it made me so happy to see even the slightest movement! And I have seen major changes in his interaction with others and play with toys. He has even added a rather flirtatious bat of the eyes to his oh-so-sweet smile!

So… I will update my blog as I am able. Thank you all for your prayers!

A Call from the Surgeon October 1, 2008

Well… we heard from the surgeon. I’m not sure if it’s really “good” news, but it sounds as though she is going to give us until December to do some aggressive physical therapy, and then repeat all of the tests that he just went through.

The assistant who called said that his ventricle size is up slightly, but not up enough that the surgeon is going to order surgery just yet. She did request that we come see her in a month to measure his head.

So the waiting continues…

September Randomness September 29, 2008

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)

Thursday’s Update September 26, 2008

I am feeling the pull of gravity right now… but it’s not just down… it’s down toward my bed. What a long day. Josiah had his optical exam at 1:15. It lasted for about 45 minutes (because of time needed to let the eye drops work.) The Doctor was very outgoing and friendly, which made the appointment quite pleasant. The first basic exam came back good, and, after his eyes had dialated, the second exam also came out with normal results. I was so happy to hear that good news!

After that exam, we wandered around Lincoln Park for a while, grabbed dinner, and then headed back for the MRI. I was allowed to go into the test room with him. They had him all bundled up – he looked like a burrito. His outer “shell” was an air-filled pouch that tightened to restrict his movement. They also put plugs in his ears, padded his head, and strapped it down firmly in a frame. Through the entire bundling process, he continued to flirt with all of the nurses and technicians.

The last MRI that he had done required that he be sedated, and it lasted for a couple of hours. This time was quite a bit shorter – well under 10 minutes, so he was left alert. While in the MRI tunnel, he went from happy to sad, and then back to happy. I think that I would rather hear him cry a little bit, than have to watch him wake up from anesthesia like the last time.

We did not receive results from this MRI tonight. It may be up to a week, although I think that the surgeon will probably call us as soon as she is able to.

Thank you all for your prayers, e-mails, etc. It has been an encouragement to us… As soon as I have news the MRI, I will write an update!

Autumn is Here! September 23, 2008

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!

5 Generations July 9, 2008

The oldest daughters of 5 generations. All of us have the middle name Marie. (last names: Bauch, Swets, Veltkamp, Bessette, Bessette)

Bored Kids?

Kids Craft Weekly

Fun project ideas… I can’t wait until Hannah is a little bit older!

99 Balloons

99 Balloons