The oldest daughters of 5 generations. All of us have the middle name Marie. (last names: Bauch, Swets, Veltkamp, Bessette, Bessette)
Fun project ideas… I can’t wait until Hannah is a little bit older!
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! 🙂
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.)
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.