Benjamin’s blood work came back fine… no Muscular Dystrophy. I am so, so glad as I’d rather he have Cerebral Palsy than that any day. MD is degenerative, CP is not. So, while we are grateful for the good news, things still don’t add up. We believe he is fine cognitively… we aren’t concerned that he doesn’t point for things or say Mama or Dada specifically. We don’t see a delay here but it just doesn’t add up that he is 13 months old and cannot even get into a sitting position. He’s nowhere near crawling or pulling himself up. Maybe this is developmental delay but I don’t understand it, it’s new to me. His arms work fine but his legs don’t. I like to see things add up and make sense to me… Cerebral Palsy would have explained it to me. I am glad he doesn’t have it, I just don’t understand this. If anyone has a child who is delayed physically (with no CP ) where their child could not crawl or walk like Benjamin, I’d love to hear from you. Thank you all so much for your prayers and for caring for us!
We are still at the hotel, we will head home back tomorrow. Here is the after visit summary from the MRI for Benjamin:
“Benjamin has developmental delay and hypotonia. He is unable to crawl, pull to stand, and does not bear weight on legs easily. He babbles but does not say any indicative words. To move around, he will scoot backwards across the floor. He does not point to indicate what he wants. No family history of developmental delay of behavioral problems.
On preliminary review of the MRI there does not appear to be any definite abnormalities with no signs of white matter disease that would suggest cerebral palsy. I feel that he has developmental delay and hypotonia which may be transient or may indicate long standing developmental concerns. Some individuals with Autism can present early with this type of delay, but he does not have specific features of diagnostic of Autism at this time.”
So, that’s good news that he does not have cerebral palsy. We are happy! They did take some blood work however to check for Muscular Dystrophy. When we are in the clear there then I will be even more relieved. : ) Thank you all for your prayers. I’m sleepy so that’s all for now.
Elisabeth – ten years old. When I had you, it had been 18 years since I had my first daughter in 1988 so it was like I was having my first again… I took you everywhere with me… it was as if we were bound together, the memories are so precious to me. I’ll savor them forever. Here we’re eating homemade devils food cake that I made from a quality dark chocolate bar. It was the BEST and moistest chocolate cake I’ve made. The frosting is made with some of the dark chocolate too.
Pup picked out some fabric to make a skirt with some birthday money. Here she’s pinning the skirt together. It’s a long flare skirt.
We decided since we “could” have 10 birthday cakes a year that we wanted to do something different for Benjamin’s birthday. We decided to make homemade raspberry pancakes with butter, whipped cream and mom’s raspberry syrup. We did not miss the cake!
One year old, little boy….
The cute, little face that I always see when you eat.
Clap your hands…
Beautiful Benjamin. Happy Birthday. I wanted to stop time many times with you this year. I savor the baby time so much…
Uhem, Mom’s plate…
… and nine days later the twins had their 4th Birthday. Daddy was having to rip the flooring up that day because of the leak from the dishwasher so we did store cupcakes that day. They were good too. Tabitha is on the left and Anna on the right. Four years ago we had an emergency c-section because Anna’s heart rate dipped from a high 190 down to 60 and stayed there for some time. This happened over the course of the next three hours and they delivered them at 33 1/2 weeks. Daddy cried when he saw Anna first and he didn’t even know that she was the biggest of the two. It was hard, I had to leave them in the hospital for 19 days so they could gain some weight. They were only a little over 3 and 4 pounds. We had to go in for frequent ultrasounds to check for twin to twin transfusion. I think the twin to twin transfusion happened right at the end because of the weight discrepancy. Anyways, Happy Birthday girls. We’ll do something more special on your 5th birthday! We love you!
Since this picture, Benjamin has sprouted a head of beautiful curls upon the top of his head. He looks a lot different now.
The kids are picking and eating berries. I don’t know what they are but I remember eating these same kind when I was 4 years old.
One of the many beautiful scenes we will miss here…
Dad brought back many of our 30 walnut trees to life by watering them each day for the past three years we’ve been here.
Down our next door neighbor’s driveway, another pretty scene.
…and another pretty scene…
Beautiful wildflowers… maybe they are weeds but they are flowers to us. : )
A friendly earthworm…
The scene I’ll always remember when I was bike riding two years ago. Praying my health will return to that soon. Beautiful… we will miss the quietness.
Monarchs everywhere up here…
I just took this video of Benjamin today as he’s just starting to scoot around. My friend Susan has a therapist who works with her children and she offered to view a video of him playing in order to give us some exercises to help him along while we are in transition to move. The Birth to Three program was unable to assist us here in such a short time so we really appreciate that she will give us something to work with him. My friend also recommended a therapy type ball for Benjamin though we’ll have to wait until we get settled so we don’t have to lug that thing around with us in the truck. ; )
Our appointment is coming up on the 10th of August. I am getting nervous. I just know he has cerebral palsy (hypotonic), but it is still very hard to be confronted with it so soon. Another friend shared her son’s MRI as he has cerebral palsy. It was shocking to see how much damage there was. He had suffered a stroke while in the womb (as most babies do with CP) and had I not seen that picture, I would not have been prepared for what I may see on the MRI soon. While all of our attention has been on the upcoming move, the move is becoming very small again as the tenth of August approaches, and Benjamin’s condition is getting big again and unavoidable. I have feelings of sadness and fear in me for him. I can’t wait for this to be behind us (his appointment), so we can just focus on our son and not his condition. To me, his condition is part of who he is and God wanted him this way. It doesn’t really bother me much unless I am confronted with it from the medical or world’s view. In fact, he moves his arms and hands in a cute way that I think is common to children with cerebral palsy… it’s cute, it’s him, how can that bother me? I don’t know why, I’m not concerned about his future yet… maybe I’m naive or not thinking about it yet. I just feel like he’ll be okay (even when we’re gone one day) with all of his siblings there for him. : )
He should be walking or crawling or pulling himself up now at 12 months – this is where he’s at:
I didn’t realize that I haven’t even come on here to share that Benjamin’s appointment for the MRI is on August 10th. A lot has been going on here, good and bad, so I think you will understand my absence lately.
Benjamin – We came to a beautiful place of rest with Benjamin after a few days or a week. When I was pregnant with him early on, I kept sharing with my husband Matthew, “Don’t be surprised if we have a disabled child.” My husband can vouch for this. ; ) For some reason I felt the Lord was preparing me for this and I came to a place where I thought it would be a benefit to our family and our lives more than anything else. When the ultrasounds showed him to be perfectly formed and the tests showed no sign of down syndrome, I supposed that maybe I was just thinking that up. So, it really doesn’t come to a total surprise that something is wrong with Benjamin. His cognitive development seems pretty normal and that’s all that matters to me…. I need a relationship with him whether his legs work or not. I know that sounds silly but that’s what’s important to me. I have a couple of friends who have children with cerebral palsy and while there are different degrees and types of cerebral palsy, their children who have hypotonic CP (which is what Benjamin has if he has it due to his floppy tone in his legs), their children were walking before the age of two and most can hardly tell they have CP other than a slight limp or something.
So with Benjamin it is not as hard as we thought it would be in the beginning, what was and is hard was that my health took another turn on July 7th. I walked into my bathroom to throw something away and as I turned around to come out, everything started to spin so bad and slow that I had to lay down. I remember putting my hands forward. I don’t remember falling. Hannah called to me a few times after she saw me fall and when I finally responded and told her to get Dad. She shared later that I was shaking on the floor after I fell. Matthew drove me to the ER while our dear neighbor came over to watch the kids. They hooked me up to monitor my heart. It was skipping beats so much I couldn’t talk at times and my resting pulse was high. He thought I had a case of tachycardia. They didn’t know if my fall was heart related or if I fainted or had a seizure or what. The ectopic beats were only PVC’s so they sent me home after a couple of hours and set me up on a holter monitor the following week to check my heart. It came back normal. Going back… they did do a CAT scan on my head and didn’t see any tumors either. I am supposed to see a neurologist now for an EEG and MRI but the appointment isn’t until October…. we can’t do that because we are moving.
Moving now? Yes, can you believe the timing of it all? We seriously considered pulling the home off the market but we had just had some people look at the home before all of this happened. We then thought that since all of the important appointments are 4 1/2 hours away in Spokane, it would be better if there is a problem with Benjamin that he needs further evaluation or me with the neurologists that we can head to Kansas after the closing of the home and be hours closer to a big hospital. The University of Kansas City Hospital has 34 neurologists alone! The timing of this could really be wonderful. We just can’t keep going to Spokane for serious appointments anymore, it’s really just too far.
Next, in the middle of the purchase and sales agreement to our home, we found the dishwasher had a small leak as we had found a couple of bubbles underneath the vinyl when we pulled up the rug. Our insurance deductible is too high so we are having to pay for this ourselves. : ( It is hard. We just painstakingly did without since November to pay off so much debt…. $14,000 – beans and chicken is what we’ve lived on for dinners. We only have one last payment of $700 and so this is very, very hard on us. My poor husband has been working on the floor for days now. He’s tired but he’s cheerful. I love him so. We pulled up most of it in a day. I cut the vinyl and he pulled up the pressboard underneath. They shouldn’t have had pressboard in a kitchen as it expands when it gets wet! He wants to do the job right so it was a labor to get down to the original wood. Matthew has laid tile and wood floors, tiling in kitchens and done roofing for years in his own business before we got married so he knows what he is doing. We had some professionals come out and look at the water damage and check the moisture in the wood with a hydrometer. They set up hot air blowers for a few days and they finally came out today, were satisfied with the results and patched up the drywall on the ceiling in the basement. They did an excellent job – excellent. Matthew is nearly done prepping the floor now so he can start to lay the bamboo flooring tomorrow. It is so pretty that I told him to keep a piece that’s left to take with us as a sample for our next home one day. So, please pray for my husband as he finishes the prep work and starts laying the flooring tomorrow. I’m washing dishes by hand but not too many…. lots of paper plates and sandwiches and crackers, cheese and salami and fruits. We don’t want to put the table up again so we just disassembled it for the move. The kids eat on a small table in the bedroom and on some desks we around…. sometimes just the floor.
We’re all getting by okay. I am feeling well now, pretty good on the energy, happy and optimistic. I’ve been taking some adrenal cortex from Swansons Vitamins and I think it’s been helping. The kids are enjoying their break from math. : ) and we are just so happy that we are moving. See, God does reward our faith and works when we do them. Often times we get ourselves into trouble (us buying a home that’s over our heads) but He shows us the way out. I knew, I just knew that when we paid off our debt we incurred by how the sale of our home went in Iowa and buying this home here that God would move us soon if we would just pay off our debt and here is the evidence of God’s work, the witness of how faith and works go hand in hand, how a little suffering in obedience is really the right way oftentimes (contrary to the teachings in the church today). : )
So, please continue to pray for us. All of our dear friends you all mean so much to us. We love you all! You’ve shown us love, care and concern these past months and it’s been so good to our hearts. I will find a day to catch up on our pictures from a walk from a month or two ago… a cute video of the kids running around the tree on our property and then will blog when I can or share a quick update on Benjamin or the move coming up around the first of September. Take care, I hope you all are having a good summer and trying to stay cool. : ) Talk to you soon! Thank you for your prayers.