March 29, 2012
So this whole farm thing has it’s ups and downs. One difficult aspect is the fact that travelling as a family takes on a whole new level of complication due to the fact that you leave behind hungry animals, full udders, daily eggs, and emptying troughs. Enlisting help to manage this is difficult to say the least, especially the milking part. As such, we’ve decided to take two solo trips to the farm this year. The first one started Saturday. My lovely wife left me with five human kids, 6 goat kids, three does, 17 bunnies, 12 hens, one rooster, a pregnant donkey, a guardian dog, a pet dog, 25,000 bees, and a feline with cerebellar hypoplasia (brain damage). I’m not as literarily gifted (is that a word?) as my lovely bride and I’ve never posted on a blog in my life. So those of you who are regulars don’t expect the beautiful prose of my wife nor the vast spillage of knowledge. This my friends, is a tribute to what she does. And more importantly, a warning to other hubbies who would even consider the insanity of sending their better half 1000 miles away for 8 days.
Day 1: Mom leaves early in the morning, all 5 human kids are sick with some sort of coughing-sneezing-stuffy-head-Dad-can’t-rest disease that leaves a perpetual green line of fluid hanging from one or both nostrils. Trying to keep those booger ornaments at bay is like trying to chase chickens into a coop at 3 O’clock in the afternoon. Mom says I have to butcher the rooster because it’s attacking my kids. I slaughter the beast and begin the evisceration which is only a forehadowing of dinner that night. This rooster was the toughest bird I’d ever butchered. The skin was like cowhide and the internal connective tissue was akin to the gator skin bullet proof vest I wore in Kuwait years ago. I finally got him cut up and had the grand idea of having fried chicken that night. Now a word to the wise. A year-old Brahma rooster is nothing like a 6-week old Cornish Cross, but we’ll get to that later. First I read one of Momma’s cook books and the chapter on fried chicken made it sound like a walk in the park. A little oil, a little batter, a few flips in the pan and Viola, crispy fried chicken ready in minutes. Hogwash! 15 minutes into the ordeal the flour mixture was turning to drywall paste and wouldn’t stick to the chicken, although it stuck just fine to the mentally challenged cat and various parts of the kitchen. The oil went from 80 degrees to 400 degrees in about 30 seconds and smoke was now billowing upwards towards the smoke alarm (fan comes on, doors open). The book says put the chicken in at 360, cook for 5 minutes, then bring the oil down to 300 and flip every 5 minutes. Oil in a cast iron skillet, on a glass top stove, with chunks of cold meat thrown in is not a thermally stable system (excuse me, I’m an engineer). The oil temp through the whole process fluctuated like the stock market. I was shootin’ for a mean temp of 310 with a standard deviation around 30. I ended up with what actually looked like fried chicken, and a kitchen that looked like something you’d see on the reality show “Hoarders”. I set the table, blew all the kids noses, and sat down for a meal. The first bite was more like a first attempt. Back to the tough skin, tough tissue, and year-old Brahma. Yep, the texture of carbon-reinforced beef jerky. Time for bed…
Day 2: Our prize milking doe, promised to put out 8+ lbs a day gives me 0.75 lbs after 12 hours of separation from her kids. Not good, I’ve got a sick momma. Can’t go to church because I’ve quarantined the entire brood after a night of coughing, crying, menthalatum rubs, and snot patrol. Septic system is backed up. Oh yes, it is a day of rest, for God hath declared it as such. So what do I do? What any good Christian should do…Twister. Yep, that Milton Bradley game from the 70’s. After a wonderful online sermon from our old church in Vegas, I whip out the Twister and forget about the worries of the world. It’s even a little mentally challenging because my 5-year-old keeps forgetting which is her left and her right. I try to tell her from the opposite side of the mat and confuse myself. After that I make a quick lunch and put the boys down for a nap. Knowing that God allows us to get our Ox out of the ditch on the Sabbath I unbury the septic lid and take a look. Worse than I thought, I immediately institute a new potty policy. Yellow can hang around but brown must go down. I spend the afternoon devising ways to reduce water flow to the septic system and researching the internet for solutions. I also diverted the washer drain out the dryer vent hole and into the back yard to keep it from going into the overflowing septic. Great idea until the first load. You guessed it, I inadvertantly loosened the connection to the washer and the first spin cycle sent water gushing onto the floor of the laundry room and spilling into the carpeted floor of the entry way. I’m maintaining my sense of humor.
Day 3: Time for work. Babysitter shows up at 0730, I’m out the door. One of D’s goat mentors tells me she found some great hay up north that might entice my sick doe to eat and maybe bring back her milk flow. I leave work early, borrow a truck, drive up north and pick up two 900 lb square bales of hay. Now I’m not a farmer. The biggest bales I’d come across in my few years of farm life were 125 lb bales in California. I knew I was in trouble when the guy dropped the first bale in the back of this Ford F-250 King Cab Diesel and the thing squatted like a Budda. The second bale made it look like I should get chrome spinners, put a neon light on the bottom, and cruise the strip with the stereo blastin’. I immediately wondered how in the world my 145 lb runner’s build was going to get the equivalent of half a Clydesdale out of the truckbed and onto a pallet. Dressed in a pretty flight suit and bearing officer rank (city boy) I’m sure Tye (the 7-foot tall, overall-wearing forklift operator) probably wondered the same thing. I actually saw him chuckle as I drove off. Although I’m not a farmer, I am an engineer. I fully understand the principles of static stability, Dynamics, and mechanical advantage. I laid out a 10-foot pallet next to a tree and between two others. I figured once the top bale fell, it might have a tendency to roll off the pallet, thus the tree would stop it. The other two trees were used to anchor my cargo straps that wrapped around the side of the bale. I cinched them down enough to tilt the ensemble, but not topple it. I then checked the spacing, estimated the point of landing, and positioned the pallet just right. Standing to the side, I called “Clear” and pulled on the strap. 900 lbs of tightely wound alfafa tumbled off the side of the truck and hit dead-center on the pallet. Who’s laughing now Tye? Photo Op…..
"A" and "N" showing off Daddy's precision drop. Notice the trees.
Day 4: Dog vomit! Four piles, all on the brand new carpet, none of it on the vast expanse of hardwood floors upstairs. With catlike agility I spring into action, get out the steam cleaner and in an hour there’s not a trace. Only the lingering odor of something not quite right. Having desensitized myself to the odor, I head outside to tackle the septic system. My research tells me that the garbage disposal coupled with 5 young kids, coupled with undiverted grey water (washer, showers, dishwasher, etc.) all add to the overloading of my 20-year-old leach field. I decide to open all three access holes to the septic tank for an amatuer inspection before calling the $100 per hour sanitation engineer who will tell me the same thing. Sure enough, floating sludge all the way to the third chamber and a water level over the spillway to the outlet. In layman’s terms that means start using the outhouse. I lay down a few more rules: baths will wait ’til Mom comes home, peeing outside is perfectly acceptable, no more garbage disposal, and the dishwasher will only run if the dog can’t lick the plates clean enough. I pull the sludge from chamber three with a dog pooper scooper, pull some roots from chamber two, and within a day I’m back down below the spillway. Now I’ve got to drop the kids off at a friends house and take A to his PT appointment. Little did I know that I’d walk out of that appointment with a three-year-old in two leg casts up to his knees. How in the world do you dress a kid with two leg casts? R didn’t nap at the babysitters house so she cries the whole way home. Little “A” wants to take his “boots” off but I explain that they’re on for the next 10 weeks, he then tries to stand up and falls out of the van. “M” and “S” help “A” to the door and “N” needs a tissue. I pull the crew inside, cook dinner, burn the garlic toast, set off the smoke alarm and pray that bedtime will soon come. After a night-time stroll to the compost pile to relieve myself, I hit the bed.
Day 5: Babysitter comes again so I can squeeze in another half day at work. She says, “I just saw a fox running across the road with something in his mouth. He dropped it when he saw me”. Panic! I run outside, across the pasture and into the road only to find a dead Brahma hen with teeth marks all over. There ain’t no way that fox is coming back later to get his bounty. I throw an apron over my pretty green flight suit and butcher that chicken in the driveway. I pull out the last egg she will ever give us and show the kids all the other eggs ready for a shell. We feed the organ meat and undeveloped eggs to the dog and I quarter the meat. It’s in the freezer and that fox is still hungry. I head off to work. My son calls at 10 O’clock and says the goat mentor looked at my sick goat. She’s going down hill fast and there’s not much I can do. “S” also reports that the rabbit dug his way out of the pen and is now locked in the garage. I leave work early again and try to save the ship before it sinks. I remove the rabbit from the garage, fill his hole, and lay wire fencing on the ground to deter digging (notice I say deter). I call another goat mentor and a vet for advice but it doesn’t look good for momma goat. I’m now down to one-gallon left of frozen milk before I need to find another source to supplement her kids with. Haven’t solved that one yet but I’ve got another two days. I’ve also got 30 projects to grade, an exam to write, meals to cook, and 5 sick kids to heal. Lastly, I caught a goat taking a bite of rubbard on the way back to the pen. Luckily she spit it out but another goat grabbed it. I hope it’s not enough to be dangerous but my first priority tomorrow is to fence in that rubbarb. Dirty diaper, cat just puked a hairball on my lap. 3 more days and my wife will return to save me….more later.
March 23, 2012
Posted by redgatefarm under Animals
, Farm Life
Finally, after months of anticipation, weeks of prayer and worry, and too much stress, our Kinder doe, Arabella (aka Bell) kidded last night!
I have been so stressed about her delivery. Her due date was not for another 8 days according to the breeder, at which time I would have been away on my trip. That was bad enough, knowing not only would I miss it, but S would have to handle things–which he wasn’t too keen on. So, I was caught off guard when I fed breakfast yesterday morning, and, when I checked her ligaments (a morning habit within a week or two of delivery), I noticed they had disappeared. I know the breeder housed her with the buck for about 6 weeks, so apparently, there was a bit of a rendezvous prior to the date they thought. In any case, as has become my routine with does in early labor, I put all the goats out to pasture, which I can easily see from the house. Within a few hours, I noticed Bell was hanging out by the fence yelling a lot. Anytime she would see me (or another person, for that matter) in the window or outside, she would really yell. It was clear she wanted out of the pen. Curious, and knowing she is a people-loving goat anyway, I let her out. I then proceeded to spend about 1/2 the day doing some outdoor chores. Bell was happy as a clam, as long as she could see me or be near me or one of the children playing. It was obvious something was going on with her. As a precaution due to my last 2 kidding stress-related issues, I gave Bell some free-choice fresh kelp, yeast, and a dose of Vit a,d,c, and B12, all of which she seemed to enjoy and appreciate.
I continued to monitor throughout the day, then put her in the kidding pen that eve. There had been no additional changes other than she just seemed to want to be with people. I took my shower, and around 10:00, decided to check on her before heading to bed. I found on her lying on her side, grunting, panting, and generally acting miserably uncomfortable. I went back inside and quickly got dressed in some work clothes (I was only in a nightgown, and not one that was very conducive to delivering kids!). Long story, short, after 3 hours of first-stage labor, being a complete baby, and milking it for all she was worth, she finally progressed into second-stage and started having big contractions. She eventually popped out 2 perfectly healthy, full-term, strong and vibrant babies–1 doe and 1 buck.
Bell is a first-time mom, and the first boy’s front legs were back a little too far (elbows were bent, so his nose was almost even with the hooves), so I did wind up pulling him, one leg at the time, to help her along. I then placed him beside her, and she looked at him like he was an alien. She had no idea what to do with him, and threatened to get up and leave until another wave of contractions made her lie back down. Between contractions, she sniffed him a bit, but she was taking so long, I decided to go ahead and ensure at least his face was clean and clear so he could breathe. Then #2 came out with no trouble at all. Since Bell still hadn’t shown any signs of licking, I went ahead and cleared the little doelings nose and face, and placed her beside mom’s head as well. It took a few more minutes, but Bell, too exhausted to stand, finally took a hesistant lick. That seemed to slowly trigger some mommy instincts, and she finally set to work cleaning her babies. It was at this point that I noticed how much fluid she had produced. There was a lot more blood and fluid than the other 3 deliveries I experienced–but, not so much blood I was concerned. It was just interesting to note.
After about 45 minutes, the babies were up and walking (relatively speaking), and looking for a teat to nurse. Bell, on the other hand, thought she was done and refused to get up and cooperate. S and I forced her to stand, brought the babies over, and let them nurse. Again, that seemed to trigger the final instincts to kick in, and after all that, she took charge and accepted them as her babies. She has since proven to be a good mom. As it turned out, the babies look almost identical in color to mom and each other, and the doe has the hilarious Kinder trademark “airplane ears” that stick straight out, while the buck’s ears are floppy like mom’s. For some reason, everytime I see the doe’s ears, I think of that old show I grew up with “The Flying Nun.” You can see for yourself.
The following information is just for my future reference:
- 8:00 am–ligaments gone and bagged up
- 10:00–very vocal and desiring human contact almost continuously
- Spent the day working outside so she could be with us
- 8:00 pm–fed, watered, and checked on her. No progress.
- 10:00–checked to find her lying on side, experiencing small contractions.
- Monitored for the next 3 hours.
- 11:30–still no progress, so I gloved up to check on things. I found her cervix effaced but not fully dilated, and couldn’t get past it. I had to wait it out.
- 12:00a.m.–Mucus finally visible.
- 12:50–Hard contractions started.
- 1:00–Baby #1 born; a buck, 6.5 lbs.
- 1:15–Baby #2 born; a doe, 5 lbs.
March 23, 2012
Things go wrong. It’s a fact of life. I have always found the rewards of farming–particularly livestock farming–to far outweigh the downsides of it, though. I never could understand how easily people would give up and sell out. Until now–and there’s nothing easy about it.
This birthing season has been frustrating and discouraging, to say the least. It is frustrating to see how “backyard” goat raisers, who often have ill-bred goats, give little thought to their goat’s nutrition or state of health, don’t make an effort to attend births, don’t necessarily even make an effort to know each goat. I recently toured a lady’s farm who didn’t even know how many goats she had (over 90). Yet, they often seem to have so few problems with their goats. Now, granted, they wouldn’t know if they did have stillborns and such, but hopefully you see my point. Then, there’s folks like us, who invest in quality, carefully bred goats, do their best to ensure good nutrition, excellent health, and timely maintenance care, personally know each goat and personality, and so forth. Yet, despite our efforts, it sometimes seem we suffer problem after problem.
I would never give it up, simply because I know the value of their milk for my family. There have been days recently when that simple fact is what keeps me going. We got into goats initially because it was so much cheaper than paying our monthly part of the cow milk share, which boiled down to $8 per gallon of milk. By the end of last year’s milking season, we were valuing our milk at roughly $4/gallon, which was a huge savings–especially if you consider that raw goat milk shares around here are worth $16/gallon. Then, having faith that this kidding and milking season would work out at least mostly as planned, I dried up Lilac and Sara in anticipation of this season. For 3 months, we had to buy milk again (from a willing friend with goats). Then Lilac kidded, which cost an unexpected vet bill. Things got going well finally, and Onyx kidded, and though I had a few concerns, everything seemed to be going OK. A few days before I started milking her, Lilac and Sara left for their new home. And Onyx went downhill. At first I got less than 2 lbs of milk each morning from her, despite her history of being an 8 lb/day producer. Within a few days, the milk tasted horrible, and we determined she likely had sub-clinical mastitis, as well as the potential for clogged milk ducts due to her year of being dry (before I bought her). Running out of time and ideas, I finally agreed to my mentors advice to use the antibiotic infusion “Today” to see if it would help. In addition to a bunch of homeopathic treatments at the same time, we finally got her back up to par, but while it softened her udder, the amount she produces has not increased at all.
So, here we are, 6 months into not having a dependable supply of milk (I even had to bottle feed Onyx’s babies for several days during her treatment), over $3000 in the red in terms of goat expenses, and no clue what to expect next. Thankfully, I had the foresight to freeze milk during our surplus time last year, and that is getting us through now, as long as we ration severely. We have not had the luxury of yogurt or cheese in months, and miss it greatly. Being dependant on your animals for your food items really gives you a whole new appreciation in times of plenty!
As if that wasn’t bad enough, of 3 rabbit kindles this season, only 1 survived. I have no explanation other than they eat the same hay as the goats. One was a first time mom, but not the other. It is just aboslutely disheartening.
The good news is, we seem to have figured out that the problems are indeed nutritional based. For some reason, the goats only want to eat kelp that is very fresh (as in, just put in their feeder). Once it’s a day old, most of them would rather not eat it, therefore they were not getting the nutrition I thought they were. Secondly, and more important, we have concluded that our hay is the main culprit of all these problems. Thanks to the drought, we know the hay was of lower quality, but since they imported it from out of state, we couldn’t find exactly how they grew it and had to take the seller’s word for it. The foremost theory we have come up with is that the fields were likely fertilized with some type of superphosphates, and the abscense of dead insects (unlike my last, much better batch), implies they used pesticides. These can work together to bind up nutrients, making the nutrients inaccessible to the goats’ bodies for utilization. As a result, we have added a few more supplements to the free-choice “buffet,” as an experiment to see if the girls can make up for the loss in nutrients from the hay. We have added a selenium/vitE powder, yeast, and organic iodine, in addition to their kelp and minerals. I have also started giving the pregnant girls periodic doses of Vit A,D,E, and B12 gel, all of which are water-soluble so any excess (which I doubt they have) will just be peed out. So far, they have shown little interest in the supplements, except for the yeast, which they love (full of Vit B). The frustrating thing is just not knowing. Something is lacking, and they seem fine–sleek, glossy hair coat, good appetite, you name it, until they kid. The stress of kidding seems to send them over the threshold, and they quickly go downhill. In the mean time, I have learned a big lesson about buying hay! Goats do not thrive on just any hay–even if they seem to like it–despite what folks tell you!
Then, just when I start to feel like I can’t handle another stressful kidding, God blesses us with success. More on that later. The little successes though, and the knowledge that farm life does get better with experience, are the reward that keeps the farm going.
March 14, 2012
In addition to all the medical appointments, we have been experiencing some big happenings and changes around the farm.
First, there’s Shiloh, the increasingly pregnant donkey.
Based on what we were told when we took her, her absolute earliest delivery date would be in March. March is here, and she has been producing some unusual discharge in the last week or so. I can’t really find any info about that though, and her udder is completely undeveloped at this point. So, I still have no idea what to expect from her. In the mean time, we have really lightened her work load and riding. JR and M are about the only one who ride her, and only for short spells once or twice a week just to keep her going.
Then there’s the goats. Lilac’s little boys are doing great, and will be staying about 2 more weeks before heading to their new home.
Lilac's twin boys, 8 weeks old
Onyx’s boys really took off after those first couple days and are doing equally well. Soon, they will both be wethered and go to the same buyer of Lilac’s kids, where they will all be weedeaters and pets.
Onyx has a history of being an over-8-lb-a-day producer, from excellent milk-star rated lines, and yet, since the first day or two, her udder always seems to be totally empty. I have checked it a time or two to ensure there was food for the babies, and I’ve been lucky to get 1-2 squirts. There’s no doubt she’s producing, though, as her twins are growing and gaining like little weeds! I will begin seperating them at night later this week so I can start milking her, and am very interested to see how she produces and milks. As if that all wasn’t enough excitement, Arabella, my Kinder doe is showing signs of very early labor, with relaxing ligaments, lots of discharge, and a nice udder. This caught me off guard, as she wasn’t officially due for another 2.5 weeks. I looked over my records, though, and as it turns out, the seller bred her twice, 2.5 weeks apart, and then gave me the final date as the breeding date. Looks like she may have conceived at the first breeding, though, as this would put her labor right on schedule. Of course, there is always the risk of a 2nd conception at the 2nd breeding, so I will need to be present in the event of a preemie kid.
Kinder doe Arabella, aka "Bell", 4.5-5 months pregnant
Along with hello’s, there are bound to eventually be goodbye’s too. Lilac and Sara left for their new home Tuesday, while I was away at A’s appointments.
Lilac, the day before she left.
I said my goodbye’s the evening before. While I am very excited to be taking the step toward having a purebred herd, I will miss the girls! Lilac was the best goat any newbie could ask for, and Sara was absolutely awesome for learning. I wouldn’t know half what I do regarding the importance of nutrition without her as my driving force and guinea pig. It was truly wonderful to see her progress over the last year. Compare the next photo to those taken over the last year, as she improved, as seen in this post.
Sara, 4.5 months pregnant; photo taken the day before she left.
Those 2 will be long remembered!
Finally, goat babies aren’t the only babies around. JR was thrilled to finally have his first surviving litter of 9 kits since he took over our rabbit program.
The proud mama doe, a Harlequin/Rhinelander cross
As you may know, we started with a desire to focus on American Chinchillas, but that just didn’t work out. Despite our attempts over 1.5 years, we have yet to have a purebred AC litter, and thanks to a sterile doe, we haven’t had any litters kindled since Lala’s last June. Since the KS breeder admitted his line had proven to be weak, we finally decided to not invest anymore and give up the AC program, then bought a bunch of very hardy Harlequins and Harlequin/Rhinelander crosses from a breeder going out of business, and started over. We harvested our sterile doe, but I just didn’t have the heart to harvest our AC buck yet. I knew he was fertile, though he had little interest in breeding. Then, we discovered the Harlequin doe we had chosen to keep him company in his large hare-pen was pregnant. So, we knew he would breed–just in his own time. The real reason behind keeping him, however, was that he was quite untame when we first got him, and JR had worked hard to tame him down. Now, he LOVES people, loves attention, and loves to be petted. Even JR was trying desperately to find a way to keep him.
Pelham, our AC buck, saying hello as S enters his pen.
Then, with full cages, a new crossbred litter, and 3 other (hopefully) pregnant Harlequin does, I got a very unexpected e-mail from a lady right here in CO, not too far from us. She was going through some hard times, and needed to find a home for her pedigreed AC buck and doe, both of which were just hitting breeding age. She liked the principles and methods we raised our rabbits with, and wanted to GIVE us the rabbits, their hutches, and all remaining supplies! We couldn’t turn it down. So, we brought them home, let them acclimate to their surroundings, and then I introduced the doe to our AC buck, as he needed a new companion in the pen. Within seconds, he had her bred. Guess they liked each other.
A playing with one of the new AC rabbits.
We will use the second AC buck to rotate the doe’s breeding with. Since my buck was from a KS breeder breeding for strict breed characteristics, and these 2 were from a GA breeder breeding for hardiness, it will be nice to mix the two lines. Hopefully, if all goes well, we will soon have our first purebred AC litter, and finally contribute toward preserving this amazing and beautiful, but critically endangered breed of rabbit. In the mean time, though, it looks like Athena will have a nice supply of cross-bred and meat-quality Harlequin rabbits to supplement her diet.
Speaking of rabbits, here are a couple photos I took recently just for fun. The “hare-pen” that the American Chinchilla rabbits live in is also occasionally used for other purposes. Recently, we had to use the pen when I was weaning Lilac’s bucklings from her, and at night, we would put Athena, the LGD in with them for extra warmth and protection. The dog and goats have their own shelter to go into, and the rabbits have underground nest boxes as well as an area off-limits to the goats and dog so they can escape if they want. Typically, though, all hang out together. Certainly not a usual mix of friends!
Pelham, the AC rabbit, Athena, the LGD, and one of Lilac's little boys, all just hanging out.
Athena, the LGD, and Pelham, the curious AC buck
March 14, 2012
Posted by redgatefarm under Health
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It has been a very busy couple of days, to say the least. Among many other goings-on, we have had two days full of appointments–most of which were for A.
Monday, we had an evaluation for speech therapy, which was very enlightening. As it turned out, A passed well within the normal ranges. His vocabulary was incredible–I didn’t even know he knew that many words. When identifying photos, if he didn’t know the actual word, he was very good at using other words to explain what the items were. He followed instructions well, caught on to the exercises quickly, and just overall, really amazed me and the therapist. That being said, it also became clear that his vocabulary and comprehension were not part of his problems, as I had believed. Rather, through the eval process, it was easy to see that his problems were in annunciation, transitions, and pulling things from his memory “files.” I was thrilled, and though the therapist still thought he would benefit from speech therapy, she said we would be OK to do the required therapy exercises with him at home. I have to go back in a couple weeks to pick up our homework assignments. She didn’t think it would be difficult to overcome his annunciation problem, but did encourage us to pursue seeking the occupational therapy and getting the results of the EEG.
Tuesday was also very enlightening, if one of the more difficult days we have had on this journey. It was the long-awaited EEG test, followed by another appointment with the new neurologist at the children’s hospital. In case you didn’t know, an EEG, which measures and reads brain waves, is more accurate with a sleep deprived brain. Therefore, I had to keep A up until midnight the night before, then we went to bed for a few hours, then S had to wake A up at 4 a.m. and entertain him. Finally, JR, A, and I loaded up just after breakfast to head to Denver. JR agreed to come along to help keep A awake on the drive. We spent the entire day in Denver. After the testing, we had about 2 hours before our follow-up with the neurologist, so we went out to the car where I made a bed of sorts for A to nap. He did, thankfully, which made him a little more tolerable. A 3-year-old running on 4 hours of sleep is NOT pleasant, to say the least. During our follow-up, the new, now permanently assigned, neurologist once again evaluated A from head to toe. He noticed several issues that the previous neurologist missed (or perhaps A’s neurologic symptoms had worsened–don’t know). In one instance, he even got to witness one of the many daily falls A experiences, as he fell over backwards, landing in a heap on the floor. This inspired a bunch of questions from the doctor for me to answer. Finally, he read the EEG results, and discussed the findings. To put it simply, A showed some frequent, though mild (as in can’t see any seizure on the outside) seizure activity in the right side of his brain. He also showed very slow synapse connections and electrical impulses. In laymen’s theory, this POSSIBLY means that the seizures are not allowing A to sleep well at night, may be contributing to his periodic night terrors and frequent restlessness (although he appears to be sleeping), which in turn, would account for his behaviour in the daytime. It is also possible they are related to his frequent falls. The slow connections are likely an explanation of why A can’t find the “files” of his brain, and transition from one task or thought to another with normal speed. In either case, we still don’t know the cause.
This EEG was very basic, but it showed enough to confirm I wasn’t imagining things, and that further testing is a necessity. That being said, the next step in terms of neurology is a 3 day/2 night EEG and sleep study. A will be monitored for the full time he is in the hospital, through both EEG wires and video cameras. I will be with him the whole time, but we will not be allowed to leave his room. In the event the doctor gets the results he needs sooner, then the test may end sooner, but that is the alloted time frame we have to plan for. He said this test should tell us just how intense and frequent the seizures are, and give us a much better understanding of the reasons behind some of his issues. This test, combined with further amino acid testing done yesterday, in combination with the upcoming endocrinology appointment and metobolic tests that will be done, should mean that we will have definitive answers and a plan for dealing by summer. How wonderful that day will be!
As a parent, you never want to wish something is wrong with your child, or that a test result shows something less than perfect. At the same time, however, when you have struggled for almost 4 years like we have, seen your child regress, plateau, and be delayed, witnessed him struggle through his days–both physically and behaviourally, and your gut has screamed for so long that something is NOT right, it is really quite a relief to finally have a test show something. Thankfully, everything still seems to be mild, and possibly treatable. But, this new-found knowledge will help direct us to the proper experts who can teach us how to best deal with A and his issues at this time, and hopefully get him on a good track for future development.
March 9, 2012
Isn’t it funny how God works? It’s not that I think He likes to see us struggle or anything like that, but sometimes, I get this vision in my mind’s eye of Him sitting back, and enjoying a little entertainment, as we mortals bang our heads against brick wall–especially when we forget that He is ultimately the one in charge. Before we get too bruised, He loves us enough to step in and gently remind us that He takes care of everything. Then, of course, as soon as things start going smoothly again, we repeat the process all over again.
After countless head bruises from my banging my head on the wall in my attempt to do the best for A, S and I prayed one evening, and just turned it all over to God. I felt I had done what I could, and though we felt further steps were a good idea, the appointments I wanted and that the specialists recommended just weren’t happening. We handed A to God, as we had done when he was an infant during a dedication ceremony, and asked God to give us the wisdom to know what steps to take, or the peace to just trust God to provide and allow A to develop at his own pace. It is just so easy as humans to forget to do that, and to forget that God always provides in His time.
In any case, all of a sudden, doors are opening all over the place. For some reason, S jumped the gun a bit, and decided to start making phone calls to the clinic patient advocacy, to the primary care pediatrician directly, and to the specialists we were still supposed to see. Based on what he found out, we have appointments opening left and right–anything we want. We are both puzzled. For example, during 4 phone calls seeking an endocrinology appt., I was told the doctor had to consult with the endo, all medical records had to be faxed and THEN the appt. could be made. But even then, there were no openings until August. As of today, some angel answered the phone at the endo’s office, and next thing S knew, he had an appt. in April, no consults required, and a simple request that paperwork be faxed as we have time. It was that simple. But that wasn’t all.
A call to the pediatrician apparently determined there was a huge middle-man/voicemail/whatever miscommunication, and the doc (well, his middle-man nurse) told S that the ped is happy to do any consult he needs, and will do whatever it takes to have A seen wherever he needs to be seen. Not only that, but she was as baffled as S when she discovered that we had a physical therapy and a speech therapy appt. Apparently, the referral he authorized was for a simple consult with a doctor, and somehow, unbeknownst to anyone (God at work, perhaps?), that referral turned into the appointments we got. As if that wasn’t enough, they have also already authorized the occupational therapy A so desperately needs, and apparently did so quite some time ago. It got lost in the Tricare system somehow, and we were never notified (despite my five-million phone calls to them–OK, slight exaggeration). Whatever happened, it’s there now, and I just have to get the info (which S is working on) and make the appointment. They also informed us it will be done without any threat of public school intervention (like the IEP process), though we may wind up paying something out of pocket, which is fine by us.
Suddenly, things are moving….FAST! Appointments are beginning to stack up, and I really don’t know how we are going to handle it. S is already talking about finally having to buy a second “beater”/commuter car (anyone have one for sale?) so I can have the van when I need it. I also have no idea what I will do with the other 4 children for all these appointments, but God (and dear friends) have provided so far, and I have no doubt He will continue to do so. I do have my house-help still available on the 2 days she normally works, but at $10 an hour, I try to minimize her time, for obvious reasons!
I am just in awe. Guess I needed to struggle a bit to be reminded of how God works in his own time, and we remember to truly trust Him to make things happen as He sees fit. I have, however, told S that he may just have to handle all future appointments, seeing as how things seem to happen a lot better when he makes phone calls!
“Ask, and it will be given to you. Seek, and you will find. Knock, and the door will be opened to you. For everyone who asks, receives; and he who seeks, finds; and to him who knocks, the door will be opened.” (Matthew 7:7-8)
March 8, 2012
After much frustration and many phone calls, A had his first therapy appointment this week. This appointment was for a physical therapy evaluation, just to determine what his needs were. Once again, it was recommended that he have therapies across the board–to include physical, speech, occupational, and behavioural. In terms of physical therapy, the therapist thought he would benefit from occupational therapy far more. That being said, we have no referral, and our primary care pediatrician won’t do anything else for us at this point, so until we can arrange it, she wants him in physical therapy.
The eval was very interesting to watch, as it became very easy to see A’s physical limitations–many of which I had not really noticed previously. After the evaluation, she sat down to explain. Essentially, his torso muscles are very weak (meaning, it is impossible for him to use his torso to find his balance and stabilize himself). As a result, his extremity muscles are very tight, as they have been over-compensating for the lack of torso stability. This is why A does the toe-walking. His hip flexors are incredibly tight, as are his hamstrings, calf muscles, ligaments and tendons. This totally prevents the tissues from being used correctly when he walks and runs. Although he his physically capable of standing on his flat feet, he has very limited range of motion in his ankle, so it feels unnatural for him. Once he pops up on his toes, he feels more stable. For some reason, she thought A received more neurological inputs from the ball of his foot than his heel, which only encouraged him to continue the toe walking.
We are waiting on some paperwork stuff, but it looks like the recommended plan of action will be to almost repeat the process we went through with N, shortly after his diagnosis with Cerebral Palsy. In this case, she wants an orthopaedist to cast A’s feet and ankles. She explained that they would cast at a very light leg-to-foot angle, and then every week, change the casts for ever-increasing angles, until he was flexed slightly past 90*. She said it would likely take 6-8 weeks. The muscles and tissues would become very weak and atrophy to some extent, however, she explained this was a good thing in his case, as it would then allow us to redevelop them properly with therapy. After the casts, she wants him in specialized braces, to discourage toe-walking, encourage tissue stretching, and also encourage range of motion in his ankles. She said it was highly possible the braces could last several years. One encouragement she offered, though, was that she has seen many children with neurological issues who exhibit this tight-muscle and toe-walking problem, and when casted and braced before age 5, she has seen tremendous success. She said if we wait until after age 5, the joints can began to calcify and stiffen in that position, and it may never be recovered.
And our pediatrician doesn’t want to worry about any of this until after he is 5! AARGH! Thank the Lord for “Mommy-intuition!”
So that’s all we have right now. Next week, he has a speech therapy eval, followed by an EEG appointment, followed by a follow-up neurology appt. Because the neurologist and therapist have now emphasized the importance of occupational and possibly behavioural therapies, after next week’s appointments, S and I will be paying a visit to the base clinic’s advocacy department. We hope to not only request a transfer of primary care teams, but also to lay out all the facts and expert recommendations to the advocacy group, while informing them of our ped’s complete non-cooperation at this point. A still needs to see the endocrinologist, but they won’t make an appointment without a phone consult with the primary doctor, and our doctor refuses to do it. So that is on hold.
Slowly, but surely, though, we are making progress. A does not seem to be regressing like he was there for a spell, but he now seems to have somewhat “plateaud” in his development. He is almost 4, and is nowhere near where S and M were at this age. I was hoping to start schooling him next year, but I’m not confident it will happen at this point. He can’t even remember his ABC’s or counting 1-10, and almost seems the equivalent of an 18-month old when it comes to phonics sounds and identifying things. He only knows his colors on good days. All that to say, he is WAAAAY behind. I just wish we could figure out why. I don’t want to wish for something to show up on the EEG, but it is almost our last hope in terms of learning an actual root cause, outside of just accepting that the drugs have done it to him. So that’s that. We are still traveling this journey, hoping to get answers, and most importantly, hoping to help A have the brightest future he can.
Here is a plea, though….if you happen to be a pregnant mom, PLEASE be careful what you expose your baby to while in utero. That time is soooo very critical for his/her brain development, any type of chemical can potentially affect them years later–even if they seem OK at birth.
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