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…

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!

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? July 9, 2008

Kids Craft Weekly

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

99 Balloons July 9, 2008

99 Balloons

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!