A Bruised Reed

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

Update January 21, 2009

Filed under: Uncategorized — Jennifer @ 3:27 pm

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.

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Surgery December 19, 2008

Filed under: Uncategorized — Jennifer @ 7:56 pm

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

Filed under: Uncategorized — Jennifer @ 4:11 am

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

Filed under: Uncategorized — Jennifer @ 2:08 am

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

Filed under: Uncategorized — Jennifer @ 2:57 am

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

Filed under: Uncategorized — Jennifer @ 3:56 am

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

 

Bored Kids?

Filed under: Uncategorized — Jennifer @ 3:44 am

Kids Craft Weekly

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