Eating me out of house and home

With 3 boys, I know the time is not far away when I will not be able to keep food in the house. I thought I had a few more years, though.
Do you know what Joseph ate for dinner tonight?
1. One Yoplait yogurt
2. One bowl of cream of mushroom soup
3. Two pieces of cinnamon raisin toast
4. One bowl of Strawberry Frosted Miniwheats (with milk)
5. One bowl of Cinnamon Life cereal (with milk)
6. One bowl of Cookie Crunch cereal (with milk)

Oh my GOSH! That is more than I eat in a whole day.
I know he is growing, though, him and Brigham. All their long-sleeved shirts are looking a little like 3/4 sleeved shirts these days. I tell them they have to wait until next fall before I'm going to buy any new ones, though, since they're still going to be growing and long-sleeved season is almost over down here in Austin.

Speech therapy

I'm starting Mosey in speech therapy. I took him in last week for an assessment, and today we went in to talk with the therapist after she had completed his evaluation. She told me that he is showing moderate stuttering (10% is normal for kids his age, he is showing 24%), but since it has only been going on for about 8 weeks, they normally wouldn't recommend therapy yet.

However, due to his strong family history of stuttering (me and my mom), she thought it wouldn't be a bad idea to bring him in weekly for a while to see if we can get right on top of this if it is going to be a problem. I was glad to hear this since it was what I had been thinking myself. Probably everything is going to be ok, but I don't want to take any chances.

This has been difficult for me because I will be absolutely heartbroken if Mosey has to endure a childhood of stuttering like I did. I feel very optimistic because his stuttering is much less severe than mine was at his age. He is not blocking or showing any tension or substituting words or anything, which is GOOD NEWS. He never stutters when reading or saying prayers or in other situations which for me were nearly impossible at his age. He’s experiencing "normal" disfluency, just a little more frequently than normal. My gut tells me he will outgrow this, but I also want to make sure I do everything I can possibly do to minimize any risk he may have.

Mosey is such a talkative little guy (he scored quite above average in his vocabulary and overall language development, which was no surprise to me), and it makes my heart ache to think that anything might dampen his enthusiastic little spirit.

Growing up as a stutterer was really miserable. Not only was the mockery of other kids pretty devastating, stuttering was also terrible for my self-perception. My stuttering isolated me from other kids and even from my family. My family members were certainly kind and accepting and wonderful, but when a kid can't express herself even under the best of circumstances, let alone in competition with a bunch of other siblings, isolation is pretty inescapable. It was so lonely having all these words in my head, which I could not share with anyone-- all my deepest feelings and strong opinions, funny stories, interesting facts, beautiful, well-crafted words all crammed in my head, and being unable to share them with anyone.

I experienced nearly constant anxiety about my speech, especially at school. The absolute dread and fear of being called on in class or in church to read aloud, or to say prayers, or even having someone ask your name is something only a stutterer can really understand. And many kids are not nice, not understanding, and all too willing to single other kids out for nearly any difference. I was made fun of a lot and wow, it really hurt.

Stuttering is completely humiliating to the stutterer. It still is to me, even though I'm almost completely fluent now. Nothing can bring back that shame and embarrassment as quickly as stumbling over my name, which continues to happen every now and then.

Growing up, I went to extremes to avoid situations where I would have to use the phone or read aloud or say my name. I love my name. I would prefer to go by my full name, Gabrielle, except that I can't say it. Not even now, at least, not easily or consistently. So I go by Gabby, which is cute and fine, but really, can you imagine being forced to change your very name because of a speech problem?

Even as an adult, I know at times I've developed a reputation for irresponsibility because I dislike returning phone calls, and sometimes I just can't take talking on the phone at all. I feared and hated the phone with every particle of my being growing up. I'm still not comfortable with phones. I hated being a part of a new group where each person had to introduce him or herself. I knew that everyone's first impression of me would be of me stumbling and struggling to say my name, and that it would inevitably color how everyone thought of me. People would undoubtedly think of me as stupid or a freakshow. Even the nicest kids (and adults) can rarely overcome the societal stereotype of the bumbling, stuttering idiot. It's just a sad fact of stuttering. Even stutterers are not immune.

I'm sure the experience was good for me in some ways. My stuttering improved my writing, I am certain, because writing was my one outlet for unencumbered communication (also I'm sure the reason I tend to go on and on and on in my writing...). I also tried to excel in other ways to compensate for my stuttering, which undoubtedly helped my GPA, and padded my resume. :-)

But overall, stuttering was a miserable experience, and not one I would wish on any child. Especially my own.

So for the next 8 weeks Mosey will go in every week for a half hour and hopefully have fun and learn better control of his speech. I know that speech therapy, especially for stuttering, has come a long way in the last 30 years, and even if he does end up struggling with stuttering on a long-term basis, he has a much rosier outlook than I did. But I still can’t help but feel some guilt over possibly passing this hated trait on to him. Mosey is my most outgoing, friendly, unself-conscious child. He loves to talk to other people-- adults and kids. He is never shy to go and join a new group of kids. He has a lot to say and a great little sense of humor that is emerging. Stuttering will make all of that go away and it would be a tragedy. No, not the worst tragedy a child can suffer, but still one I desperately hope will pass him by.

horseback riding

Did I tell you we started horseback riding?
We've been trying to find something Joseph could really love (and that I could use as leverage if necessary), and Ben had the bright idea to try horseback riding. Joseph loves animals, and I knew right away he would love it. So we found a woman who gives private riding lessons not too far from here (helps to live 10 minutes away from big horse ranches), got the boys cowboy boots, and they've been going for about 3 weeks now. They really do like it. They ride a big brown horse named Jackson, and the three boys split the hour and all get a chance to help groom him, saddle him up, ride him, and feed him carrots. :-)
The ranch is a fun place with chickens and turkeys and peacocks wandering around, sheep and cats and rabbits and of course lots of horses. I love seeing Joseph's smile when he's up there on the horse. The teacher is really quiet and not terribly engaging with the boys, but the price is right and she's close, and so for now it's working.
Last weekend we went to South Padre Island for a couple of days, and then drove out to Brownsville for the wedding reception of one of Ben's employees. I took a bunch of pictures which I will post after I get them processed. It was fun, although South Padre probably isn't worth the 6 hour drive since we can get to Port Aransas in about 3.5-4 hours and that's just as nice (imho). It was a little cold and it rained all day Saturday, but it was still a nice getaway. The boys love staying in hotels, and love long drives (really! They get to listen to their audio books uninterrupted), and they had a very good time.
Today is back to real life and school lessons. School is going well. We still have some cooperation *issues* with Joseph, but he's coming along. Today I was really proud of him for turning his attitude around. He started the morning being unwilling to cooperate with anything (wouldn't even get dressed). I pleaded with him to not do this, to not have a big fight with me, to just decide to have a happy day and get his work done so we could all be happy together and have time to play, and, even though it took a good 20 minutes of talking him through it, he really did turn his attitude around. Last Monday he did NOT have a good day and he and I had a big fight and I had to basically force him to sit on my lap for about 4 hours until he decided to get his act together. I really REALLY hate those kinds of power struggles, and mostly try my best to defuse them, but sometimes he really has to know that I am still in charge, even if he can run away from me. He has to know I still have the final word. I am pretty reasonable and I'm willing to negotiate on a lot of things, but only if he is reasonable in return. Last Monday was not a good day and I was so afraid today would end up the same way. Happily, it did not.
Wow, parenting is hard.

cutest tootsies EVER

Don't you think?

Happy Valentine's Day!

2 degrees

That's all it took to spoil all my fun. 2 measly degrees.
Mosey was sick on Monday. He had a slight fever, and slept almost the whole day. He was fine by that evening.
On Tuesday I started feeling not-so-great. Around noon I started getting really stiff, and my eyes were bugging me (getting fuzzy). I started panicking that I was experiencing the beginning of another MS relapse, which would be disastrous. I was almost relieved when the body aches started coming on and I realized I was getting sick. I lay down at around 2:00, and by the time I woke up at 4:00, I knew I was sick. I called Ben to come home, and then got up to use the bathroom. I barely managed to make it into the bathroom, but couldn't manage to get myself back to my bedroom. I ended up on the bathroom floor, unable to move anymore at all. Mosey came in and thoughtfully brought me a towel to put under my head and I waited for Ben to come home. I'm just glad I called him before I got up to the bathroom, or I might have been stuck there for a very long time.
When Ben got home he carried me back to bed and I took my temperature, wondering what my threshold was between walking and total immobility. 100.6. Two degrees! How can 2 measly degrees cause so much trouble?
Well, I ran a fever for 3 days and had to cancel my trip to see my sister and her new baby. Boo. Not fair! I was so looking forward to taking a little break from things at home and going to see my sister and spend time with my mom and baby nephew. What lousy timing.
Joseph got sick yesterday, too, so the two of us lay around in misery all day long.
I'm no longer feverish today, but still not feeling great. And Joseph started throwing up this morning. Oh joy.
So I'm waiting for Brigham to come down with it next. I guess not having kids in public school doesn't protect us 100% from nasty little bugs.

Wall-E on the brain

Mosey went to see Wall-E with grandma Frandsen last July when I was in the hospital. When Wall-E came out on DVD, he beeeeeeggggged me for it every time we saw it at Target or Walmart. We got it for him for his birthday and it quickly rose to the top of Mosey's "favorite movie" list. The next week, he went over to play at a neighbor's house and he let Mosey borrow a really cool Wall-E toy. Mosey didn't let that thing go for about 28 hours until he had to bring it back. He loved it, he was absolutely smitten. So I got on Amazon.com and tracked down the Wall-E toy, only to find that it retails for over $60!! But Mosey wanted it soooooooo bad. I checked e-bay and found one for a lot less, but still a lot more than I would normally spend on a toy. A lot more.
Well, it has been worth every penny. Mosey loves that thing.
It is pretty cool! The whole thing collapses into a cube, just like the "real" Wall-E. It's eyes move positions, giving him different expressions. The trash compacter opens and closes, its arms expand and retract. And did I mention Mosey loves, loves, loves it? He does.
Poor Little Dog, Golden, and his various other stuffed animals, they have all been unceremoniously relegated to the toy closet ever since Wall-E came to our house. Ah, the caprice of a 5-year-old boy...

Adding another doctor to my repertoire

So I went to my local neurologist today to get the ball rolling on a couple of things. I got the go ahead from my Houston neurologist to get a Baclofen pump, and I now have a referral to a local neurosurgeon. I love having so many doctors. Two neurologists, two hematologists/oncologists, and now a neurosurgeon. I wonder how thick my medical files are? :-)
Apparently the neurosurgeon will do some sort of trial run, injecting Baclofen directly into the spinal fluid to figure out dosages, etc., and then do the actual surgery implanting the pump. I don't know a lot of details about it yet, but I'm sure I'll learn. The pump involves implanting a device under the skin, I think in my abdomen somewhere, that will deliver Baclofen directly into the spinal fluid via a catheter, also under the skin. This will be good because I'll be able to be on a lower dosage of Baclofen, but it will hopefully have greater effect, since it will be going right where it needs to be. My doctor told me that the Baclofen pump works pretty well for M.S. patients with primarily spinal cord involvement, which is me.
For those who don't know, Baclofen is an antispasticity medication. Spasticity is a very common M.S. symptom, and my biggest annoyance right now. Spasticity just means muscle stiffness, brought on particularly by sudden muscle movements. Walking is really hard, because the muscle movements involved in walking trigger the spasticity in my legs. If I've been still for a long time (in the car, sleeping at night), and then get up, my whole body will go rigid for a few seconds until I can loosen up again. Also, with prolonged spasticity, tendons can actually shorten leading to other problems. My achilles tendons have already shortened quite a bit which just makes me MORE stiff and awkward.
On the other hand, spasticity can be a helpful thing for M.S. patients, because it can actually lend strength to the legs to help bear weight. So we'll have to find the balance between enough medication to minimize the spasticity, but not so much that I can't bear weight on my legs at all.
I'm just about on the highest dose of oral Baclofen right now, and it's just not controlling it very well, plus it is such a pain to have to take pills 4 times a day (yeah I know, wah, wah). And there are some scary side effects possible with the oral Baclofen (seizures and stuff). I hope the pump will work well for me.
I also have a referral to the St. David's rehab clinic to arrange for hand controls on the van. I have been putting this off for too long, but it really is only a matter of time before I will get in a wreck, and that's not cool. I'm putting myself, my kids, and other people on the road at risk, so I'm not putting this off any longer. I don't think it will take too long. Apparently Ben will still be able to drive, even with the hand controls installed, but it will mean I can only drive the van. That's ok. Ben almost got in a wreck this morning going to work. It was raining really heavily and there was a four car pileup RIGHT in front of him. He saw the whole thing, and he was the first car that DIDN'T also crash. It really shook him up, and me, too. Driving is by far the most dangerous thing we do every day, and we take it for granted. Well, I'm not anymore, and I'm getting this taken care of ASAP.
It kind of stinks because it just makes me realize more now abnormal I am. I'll never be normal again. I have to get used to that. On the other hand, the hand controls will really free me up. As it is, I only dare drive during the day, and only for short distances and NOT in traffic. Limits me a lot. And other drives just love me, since I leave about a quarter mile between me and the next car in front of me, LOL!! Maybe I should have a sign in my back window saying, "I have slow reflexes, so BACK OFF!"
I have not heard back from Baylor about my MRI results from a couple of weeks ago. I don't know when results will be in, or if I'll even hear anything about it. I'm going on the assumption that no news is good news. If there are huge changes from last June, before the transplant, I expect they'll tell me, but if everything is stable, I probably won't hear anything.
That's the report from today!

heartache

Life is funny sometimes.

On Tuesday I awoke to a long-awaited email about the birth of my sister's fourth child. A boy! I had been hoping and hoping for a boy (she has 2 girls and a boy already, and every boy needs a brother), and hoping and hoping her delivery would be all she wanted it to be (natural), and it was! I smiled all day, thinking about baby Miles.

On Tuesday as I was going to sleep, Ben got a message from his twin sister. Her beautiful 22 month old daughter is in the Phoenix Children's Hospital, just diagnosed with ALL Leukemia.
This beautiful baby, much longed for after 3 long years of infertility.


Talk about emotional extremes.

I'm going to go see my newest nephew next week, and I can't wait. But I also can't get little Josie and my sweet sister-in-law (really, a sister) out of my heart. Angee has had more than her share of sadness in her life, and I just ache for her.

Of course, all the memories of my own baby brother's cancer diagnosis, all those years ago, come flooding back. He left a hole in our family that has never been filled.

I keep telling myself, "If a child has to get cancer, leukemia is the kind to get," since it has a very promising remission and long-term survival rate, but somehow that's not much comfort right now.

Awwwww...

Y'all may have seen this on other blogs, but I had to post it on mine 'cuz it's so sweet. Especially the end.