Fox and Broom

A mom's adventures in keeping healthy, keeping her sanity, and making stuff.

Archive for the category “Meeting Milestones”

Changes

It has been a really long time since my last update. My world has been full of lots of changes since my October posting. Some good, some not so good, some heartbreaking.

I started a new treatment called Xeloda in October (or maybe September). This has been one of my favorite treatments so far. I feel so much more normal than I have in the two and half years since I started treatments. It does have a side effect called Hand Foot Syndrome. It dries out the skin on the hands and feet and can cause cracking and sore appendages. I had to have my dose lowered due to having trouble walking. My feet had developed very dark markings. I had thought they were bruises because they were aching so badly. The pain only last three days, but the marks remained. I found out later that the darkening is a common thing among people using Xeloda. I saw it was mostly hands and fingers, but feet are in there also.

One of the funny side effects of Xeloda is that it promotes hair growth. My hair is definitely not long, by any means, but it has been growing much quicker than it ever has in the past. It seems to be a little thicker. I thought that was in my head, but my stylist agreed with me when I had her shape my hair a little. I had a natural fauxhawk going on for me that I didn’t much mind, but my the hair in the back was starting to look more like a mullet. Sorry to the mullet-lovers, but the look doesn’t suit me. My hair has gotten longish enough that it now lays down a bit better. I kinda miss my hawk. I got a few compliments on it from random strangers.

No matter how much I like Xeloda, nothing lasts forever. Especially with my treatments. I will be moving on to a new treatment by the end of this month. My scans have been showing as stable, even showing a bit of regression on my bone scan, but my CA 27.29 (cancer antigen marker) has been moving slowly higher. It is still much, much, much lower than it was at this time last year, but it is starting to concern my oncologist. Sometimes, there is action going on in the marrow of the bones that the scans can not see.

Another big change was moving. We sold our house and purchased a much larger house with my in-laws. Much larger. It is twice the size of my old house. I know it seems weird to move in with the parents, but it is a mutually beneficial move. They are not getting younger and my disease will never go away. In this way, we can take care of each other. Our new house has three levels. Three of my boys live on the top level, the grandparents are on the main level, and Gabriel, Max, the dogs, and I live in the basement. It’s a really nice basement. We have access to the backyard and a very lovely patio. Our area is closed off from the main level, allowing a bit of privacy. Nothing is totally private with four kids. I have my own laundry room and a coffee/tea table. The new schools are very nice. I kept Eldest at his old school as it is his last year there before high school.

Some of the changes have been sad. Last summer, I found out that my personal trainer had passed away. Mike was one of those people who makes your life brighter. I hired him because he had just finished treatment for leukemia and I had just gotten over most of the sickness from my pregnancy and birth of Max. I figured he would understand getting over an illness. Mike helped me find my strength and empowerment again. Even after my training sessions were done, we kept in contact and would visit at the gym. He was one of the first people I talked to when I got my diagnosis. I went through the dark time and when I was able to move again, I went back to the gym to get my legs and arms working better. He would take me aside and pray with me. I also did the same for him, but I didn’t tell him that. Last year, he had started to look sick. He didn’t talk to me about it, but I saw it. The last time we chatted was when I ran into him at the Cancer Center after my final round of radiation on my right eye orbital. I found out he passed away about a week later. Fuck cancer.

One of my best friends lost her mother to brain cancer. She was diagnosed last summer and passed in January. It was so aggressive and fast. It honestly scared me at how quickly it took her. Fuck cancer.

On March 5, I found out that Bekah passed. She was the person I had termed (in my head) as The Other MBCer in town. She was too young. She was kind and motivated. She was inspiring. Fuck cancer into infinity. Her husband wants to set up an MBC Foundation in her name for local people and eventually have it reach people across the state. Her GoFundMe is still collecting if you want to help with her funeral costs and to help him attain the funds for the Foundation.

On a more positive note, I have a lot of adventures planned for the rest of this year. Gabriel and I will be going to Greece in less than a week. We had a little bit leftover from our house sale and threw a mental dart at a world map.

Two weeks after we get back, I will be taking Sam to Orlando to experience Disney World and Universal Studios. I have been saving up for this trip for two years. As of right now, he has no idea we are leaving. He only knows that he has an “appointment” during Spring Break. He asked if he was going to have to have shots or a blood draw. I said yes to both because I am an evil mother.

My sister, Danielle, will be coming to visit me in May. I am super excited about that. I am trying to plan a trip to her area this summer.

We also have camping and family outings in the works.

Before I end this blog, I had an unbelievable change happen in January. Sam’s whole exome genome testing was finally approved by my insurance company. I have been fighting for this test for about four years. I understand that the insurance company is reluctant to approve this type of testing due to the lowish findings rate (30 – 40%), but I am at the end of my options. Our next step would be a muscle biopsy, which is twice as expensive and way more invasive. For those not in the know, Sam was born with a congenital muscular disease. For Sam, it means that he gets tired more quickly and isn’t as strong as his peers. For us, it is constantly worrying about his weight, his social interactions, working on his gross motor skills. He is currently in physical therapy and is testing out as around a 5 to 6 year old in physical skills (he is 8 right now). I am hoping for a diagnosis that can let us know if there is anything more we can do to help boost him up. His DNA was already on file and he did not have to add anything more to it. Gabriel and I flew to Seattle to put our DNA into the batch. Whole exome means that the parents are involved and it will look into our separate genetic lines for answers. Please cross your fingers for us that this will lead to something. We will get answers in three to four months.

One final thing. Of all the things I have learned this year, the hardest and the best thing is to not put off your dreams. Some dreams are expensive, but dammit save your pennies for it. Some dreams need a little extra time. Make time. Don’t put off what makes you happy.

And again, fuck cancer.

Advertisements

Frustration

It’s been a long, long time since I last posted about my middle son, my Little Owl. He was delayed in his gross motor skills probably from birth, but it was not noticeable until he was 4 months old. He is now 4 years old. And he is still slightly delayed. And we still do not know why.

We just made a trip to a neurologist in Seattle. Who pretty much told us that, yes, there is something going on with Little Owl, and no, we still do not know why. Which is all stuff I already knew. We just spent $100+ (with help from the in-laws) on a trip to hear stuff we already knew. It is really becoming ridiculous. The docs in Seattle want to see us every 3 to 6 months only to tell us the same goddamn stuff every time. Just call me on the phone and bill my insurance for your time. Save me the gas, food, and lodging.

The neurologist IS ordering a slew of new tests. Which I am hoping our new insurance will cover. They have already denied the genetic test ordered by Little Owl’s biochemical geneticist. I’m not sure they are going to approve an MRI and a spinal tap.

Now, I see the improvements Owl has made. I just want to make sure he keeps improving. We do not necessarily need a diagnosis, but it would be handy to know what we are dealing with. Is it something that we are already treating correctly with the vitamins we are using? Is it something that could be helped with other medications? Are the vitamins actually doing anything? Could a change in diet help? These are questions we can’t answer because we have no clue what we are dealing with. It could be Congenital Myasthenia Syndrome. It could be a slight variation on Mitochondrial Disease. It could be a number of things.

Don’t get me wrong. My Little Owl is wonderfully perfect in his own way. His hypotonia will be with him for the rest of his life. I just want him to be able to understand it and be able to live alongside it. When his weakness hits, it hits hard. There have been times when he will lay down in the middle of a grocery store simply because he is so exhausted. He will literally play until he drops. I do not know of any other four-year-old who will ask for permission to take a nap (“Mommy, I am so tired. Can I please go lay down?”). And yes, I see you. You, right there. I have seen the judging looks you give to my child when he lays down in the store. When he wobbles his way up the stairs to go down the slide he loves to play on. I have learned a lot in living with Owl. I have learned not to judge too harshly or too quickly. We are getting better at living life in the moment, because the next moment may simply be exhaustion.

The Big Check-In

So, last Saturday I had my 6 week check-in for the Gold’s Gym 12 Week Challenge. Not great news, but not terrible, either. I lost a few pounds and a few inches. However, I also lost some muscle. Doh! Not at all what I was going for. However, I will go into more detail about how that came about later on. For now, I will post my stats:

Before:

Weight: 170.8 lbs
BFI: 30.1
Waist: 36
Hip: 42
Thigh: 20

Now:

Weight: 167.8
BFI: 29.5
Waist: 36
Hip: 41
Thigh: 20
Not a huge difference, but a little.

Now, the reason this bit of difference doesn’t bother me is because it would appear that I am pregnant. Yay! I found out a few days after my weigh-in. I have decided to stay in the Challenge, not for weight loss, but to remain on a healthy schedule. I want this pregnancy to be healthier than my last one. I am hoping to keep diabetes away with a healthy diet and exercise regime. I really want to have a home birth with this one. I have done the hospital birth with my other two. I want to experience it on a more personal level. The healthier I am, the fewer complications I should have during pregnancy. Now, I will need to cool it with some of the classes in the near future. For now, here is my current work-out plan:

Mon: 9:30 buoyancy Burn/9:30 BodyPump/swimming (Sammi usually has therapy at 11, so I will most likely be swimming laps)
Tues: Running
Wed: weights + cardio/11 am Yoga
Thurs: Running
Fri: 9:30 BodyFlow/weights + cardio/swimming
Sat: 9:30 BodyCombat/Running
Sun: Hike/Walk

I want it noted that I am not just starting up on this exercise routine! I have kept up with my exercises 3 – 5 times per week. A pregnant woman should NEVER just start-up a physically taxing schedule if she is not used to it. It is harmful to her and to her baby.

I also plan to keep up with MyFitnessPal. Also, as mentioned above, not to lose weight, but to keep myself on a healthy diet. I will be changing my settings so that I will be getting slightly more calories. I have NO intentions of starving or harming this little baby in way, shape, or form. MyFitnessPal is able to tell how much more I need of certain vitamins, proteins, etc., and it will at the same time let me know if I have had too much of something. Love that app/website.

I also have an idea that has been brewing in my mind. I am going to start a page listing healthy, inexpensive recipes. Preferably easy ones. I got the idea from One Hungry Student. This blog is a group of college students posting cheap-o eating ideas. I remember my ramen days. Too well. I really wish I had had the knowledge then that I have now regarding cooking. And nutrition. So, that will be a future project.

While I am checking in, I will also give an update on my boys:

Sol is really making me proud. He is doing AWESOME in school. He reads about a book a day. I am loving it. Right now, he is in a challenge to read 10 hours to win theme park tickets (to a theme park we are already going to this summer – woot!). He has already read over 8 hours and there are still 20 days left in the contest. He has really become a great big brother. His little brother looks up to him. They both have a lot of fun playing games.

Sam is making strides in his therapy. He was recently given new goals since he has way surpassed his old ones. He still has a little catching up to do, but he is working on it. He has finally broken out of the 2% range for weight. He is now in the 10% range. He still looks too chubby to me to be that low, but whatever. He is healthy and he is happy.

Just Call Me Narcissus

I just realized today how focused on ME I have been in my latest blogs. So, I wanted to dedicate at least one to my boys.

Sol is doing pretty well in school, as far as I can tell. We will find out more at the dreaded parent/teacher conference in a couple of weeks. I am a little worried about his math comprehension. He does well on his math homework, but we do have to prompt him to really look at the question. His math test scores are all pretty low. His reading level seems to be really high. He’s been reading to us before bed the past couple of weeks. I think that is pretty neat.
He is slowly getting over the dog thing. Sort of. We missed going to the shelter 2 weeks in a row due to yucky weather. I took him last week and it was almost like starting over again. It wasn’t as bad as the very first time. We (I) walked an Australian Shepherd puppy. Such a beautiful boy. He was so sweet and well-mannered. Sammi and I fell on this walk… I still feel horrible about that. I nearly killed myself trying to make sure I didn’t squish Sam (I was carrying him in a wrap). He still hit his head on the rocks. Alpha Romero, the dog, became very concerned about us. He circled me once, then snuggled up in my lap and licked Sammi. I nearly took him home after that. I would have if we weren’t renting…

Sammi has restarted his occupational therapy sessions. The clinic and the insurance company are having communication issues regarding payment for his therapy. I finally got tired of it and yelled at the poor customer service lady with the insurance company. I almost feel bad for her, but not really. I did actually tell her to shut up once when she was trying to calm me down. I think my whole neighborhood now knows precisely what I think of my insurance company. She straightened it out for me. Now I need to yell at someone at the clinic.
Anyway, he is improving, but is still behind. He can do the commando crawl, but can not get into a seated position from crawling. I’ve been working on this with him. The therapist also wants him to begin actually crawling on all fours. We are starting this by having him play while sitting back on his legs. Like in Hero Pose:

This type of work will strengthen his legs and move the proper muscles that need to start moving for walking. Crawling on all fours will also help with this and strengthen his upper body and arm muscles. It is a lot of work, but we are seeing results and that is encouraging.

Sammi has started to grasp sign language. I fell off being so diligent about it and started this week to show him signs again. He will now do the sign for “more” and “done.” He is now ALWAYS asking for more. The boy is not even one and is already a bottomless pit.

A Mid-Week Update

Until today, I had done well with my meal plan. Today… I just couldn’t seem to resist chocolate. One day of indulgence isn’t too bad. I just need to be sure to control my impulses for the rest of the week. I am looking forward to my run tomorrow. I wasn’t able to run on Tuesday. We had doctors’ appointments and Sammi needed more blood work done. Bleh. However, I did walk all around Pike Street Market. If you haven’t been there, it is a huge place. It was my first time seeing it. I don’t know what I expected, but it wasn’t that lol. I enjoyed myself and Sammi seemed pretty interested in all the goings-ons as well.

I have changed gyms. I decided it was not worth my time to drive all the way out to my old gym only to get in maybe 10 minutes before the nursery calls me in to take care of Sam. My new gym has all the same classes, is nearly $40 less per month, is 5 minutes from my house (rather than 30 minutes), and I can receive passes to visit other gyms across the country (will be handy when I visit my bro and mom in December). I will miss the indoor track. A treadmill really isn’t the same as running on the ground. However, I haven’t even been going to the gym to run. I have been going to the animal shelter walking paths. So, I think it all works out. If the weather is really too poor for me to run outside, I can use a treadmill every once in a while.

 

Butterflies

I’ve been thinking about butterflies a lot lately. Partly because it would have been my sister-in-law’s birthday a few weeks ago and I have always associated butterflies with her. I have also been watching Sammi become MORE. This week he has discovered that he can get around. It isn’t exactly crawling. I also wouldn’t call it scooting. Maybe more like a cross between crawling and flopping. Whatever it is, it gets him to where he wants to go. Today, he managed to get from a seated position into a crawling position all on his own for the first time.

These are milestones that I know I celebrated with my oldest, but I never had to work as hard with him to get to these milestones. I don’t know why Sam is having so much trouble. Neither do the docs. The one test we were depending on to actually give us answers had nothing to say. It was a relief to find out he has nothing wrong, but a little frustrating at the same time. I have seen him start to improve with the help of occupational therapy and he really started doing things when we made sure to add B12 and a multivitamin + iron into his diet. It’s possible that he was just unable to derive certain vitamins in the quantities he needed from my breastmilk and from food.

Whatever it is, I do see him improving. He is still behind, but he is not getting more behind. That is encouraging.

I went running today for the first time in a few weeks. I decided to restart Week 1, Day 1 of C25K. I ran up and down slightly hilly terrain. My legs now hate me. My lungs weren’t so happy, either. Tomorrow, I aim to get to a BodyPump class at my gym. I feel like I am starting to get back on track.

Holy Stress Eating, Batman!

I don’t know when it started, but I need to stop it. Now. I have gained about 5 lbs since May. I think. I have been too afraid to weigh in. Yes, I have a lot going on in my life. This should not be an excuse to overindulge. I will have some free time tomorrow afternoon, so I will create a weekly menu. I really do very well with my eating habits if I have a list I can follow. It must be a neurotic thing.

We still have no answers on what is going on with my baby. He is improving, but is still about 4 months behind on his gross motor skills. And he seems to stay about 4 months behind. We are working to get the insurance to cover genetic testing, but they are really dragging their feet on this test. In the meantime, we have been having just about every other test possible done, with no clear answers. I really think the genetic testing will tell us something. At least let us know if Sammi will require specialized care and therapy for the rest of his life.

He had an MRI done last week. I hated that. I was there when they put him under so he would not move during the MRI. I wanted to be there when he woke up, but he was mostly awake when they brought him in to us. He still had his eyes closed, so at least we were the first people he saw. I had a hard time watching them put him to sleep.

The MRI results came back as “mostly normal.” Hehe. They found a small cyst near his pituitary gland. This appears to be a relatively common thing and I have been told by a few doctors that it is nothing to worry about now, but to keep an eye on Sammi. If he starts to get headaches, then we may need to take another look at that cyst.

I have had 3 moles taken off of my back and am now waiting for the lab results. Cuz I really need more medical crap going on.

There. That is my irritable catching-up blog.

Getting back into the groove.

I have slacked on my exercise. I am working on getting better at not doing that (slacking I mean). I worked on a weekly schedule that will incorporate classes & use of weights at my gym with my running. I have determined not to beat myself up if I can not keep this schedule. Things happen. Like the kids not waking up until nearly 10am today. I depend on them to wake me up by 8am hehe. This meant that I missed the morning yoga class. I had hoped to make it up with this evenings yoga class, but the youngest is still napping and that class starts in 25 minutes.

To help me make it more real, I am going to write out my schedule here:

Sunday: Swimming (this is the one day the gym does not have child care, so I have designated Sunday as family swim day.)
Monday: 8:20 am Running, 9:20 Body Pump (I did this class for the 1st time this past Monday… I still can’t bend my legs very well.)
Tuesday: 5:05 pm Body Attack (I missed this class yesterday because I could not bend my legs)
Wednesday: 9:30 am weight machines, 10:30 am yoga
Thursday: 8:30 am Run, 9:20 am Body Vive
Friday: 3:30 pm Weight Machines, 4:30 Body Step
Sat: 9:00 am Run

As of my last check-in with my complementary personal trainer thing for joining the gym, I lost 4 lbs and a little more than 1 inch in the month since I started my gym membership. I felt pretty encouraged by this since I felt I had not been working out as much as I could have been. I missed a full week due to being sick and Sam has been so crabby lately that I can’t get in a full workout without the child care people coming to get me. I will be über happy when those FOUR top teeth finish coming in.  Poor baby.

Sam’s doc requested metabolic and genetic testing to figure out what is going on with him. The metabolic results showed he has a B12 deficiency, which could actually explain some of his weakness. Everything else in that test came out normal, which means that muscular dystrophy has been ruled out. It could take about 2 more months for the genetic tests to come back. He is now scheduled for an MRI in July. I am not looking forward to that one.
He has been in occupational therapy for 2 weeks now and seems to be improving with that. She (the therapist) also shows us all kinds of playtime exercises to do at home.  So, I pretty much play with him during my free time, do his stretches during diaper changing and nursing, and my husband works with him before and after work.

Now, to rant on things people ask me:

Q: “Do you hold him too much?”
A: No. If any baby in the history of mankind has been held too much, I would like to see it. I held and snuggled my older son waaay more than I do Sammi and he physically developed at a faster rate than normal. This is not to say that I do not hold Sam, I am just so busy with another kid and with forcing Sam to exercise that I just can not hold him as much as I would like to. I cherish our nursing times since that is when I can hold him and not make him work his arms and legs (the stretches are quick and he can just rest while I do them). I hate this question with a passion and I get it constantly.

Q: “Don’t you force him to hold up his head?”
A: This is a dumb question. It doesn’t piss me off as much as the above question, yet, but it is getting there. To answer seriously: yes, yes I do force him to hold up his head. I do that because he does not have the muscle tone needed to get his head up on his own.

Q: “Do you let him lay down too much?”
A: WTF. Do you want me to hold him or not hold him??? He has a lot of tummy time, so I guess he is laying down a lot… exercising. I stopped using devices that allowed him to lay down and do nothing when he was 4 months old: baby bouncer and swing (that was all I had for him in that category). I sold them and bought a Bright Starts Bounce Bounce Baby. My hope was that he would look up at the toys and reach for them more. Sometimes he does, but mostly he stands in it with his head resting on the ledge. It’s pretty pitiful.

I guess I get annoyed with the questions people come up with because I feel as if he/she is attacking my mothering skillz. I know I am a good momma and I know I shouldn’t let these things bother me, but they do. There is a level of insecurity where I have to wonder if his lack of muscle tone is due to something I did or did not do. Logically, I know this is not the case, but there is still that worry in the back of my mind.

 

Therapy

I feel like I might need some soon. Of course, I have felt like that ever since my first son came into my life. I think Sam is getting more teeth in and I really wish they would hurry it up. He has started to freak out if I am more than 5 feet away from him. I am pretty sure this is not good. I am hoping this will stop when these next teeth finally make an appearance.

I have also had the fun of feeling like I am running in circles trying to hunt down an infant physical therapist. Seriously. WTF. One place has one, but they need to refer me to another place that had already told me they could not help me, but now that Seattle Children’s Hospital has tested him, they might. They are also referring me to another place…. grrr.

Maybe I will get my therapy with running, which I will be starting up again tomorrow. Yay! Sam fits into the jogging stroller comfortably and really seems to like it on the walks I have taken with him. Although, I will be jogging at the gym, if we are able to go there tomorrow to sign up. Also yay! I am looking forward to taking the classes and taking Sol swimming.

I have 2 new recipes that I will be adding later. I still need to decide on 2 recipes to make for this week. I think I will do that now.

Meh. TMI.

I have no idea when my period should be restarting. My boy is almost 6 months old. I kind of figured it would be back on by now.

When I had my oldest, we were on Medicaid, which stipulated that I needed to immediately have some form of birth control after I gave birth. I opted for the shot as I knew I would never remember to take that damn pill at the same time every day. One of the side effects of the shot is no period. Not so bad, until you get it out of your system. Then all those hormones go totally nuts. I tried to keep my emotions in check, but I know there were more than a few times when I snapped at someone for no reason.

I knew breastfeeding would slow it up, but all of my reading still indicated the cycles would start up at around 3 – 4 months. Hmmm. Anyway. I just find it curious.

Sammi has his next big check-up this Friday. They want to see if he has improved this past month. I think he has. He was holding his head up a lot this week. On his own. I was so happy I took pictures.

That is pretty much it. It is way past my bed time and I am falling asleep at the keyboard.

Post Navigation