Weighty boy!

Last week we took Matthew for a follow up appointment to his GI doctor. They are helping us with his formula, finding the right amount of calories for him and helping us with his reflux/vomiting issues.

Matthew weighed in at 27 lbs 15 oz. and was 33" tall. When he left the hospital 4 weeks prior to that he only weighed 23 lbs 5 oz and was 31 1/2 " tall. So almost 5 lbs in one month! Crazy!!

Now that he is off of the keto diet, he is not so limited in his calories, and we can give him better nutrition. So good, that we have had to decrease the calories just a bit because we do not want him to continue gaining 5 pounds every month. He feels solid now though, which is good. He seems stronger too. And I am happy that he seems so much more happy.

We're still working on seizure control, but we are not quite there yet. We go to Minnesota in a couple of weeks to see his epileptologist and are hoping to fine tune his medications.

Comments

Recently I read this post written by another special needs mom who talked about being her child being "secretly disabled" when he was little. One of things she talked about was the comments she would get about her son when he was little. I have to say that sometimes this is one of the hardest things for me. See in our home, in our world, Matthew is well, Matthew. He looks and acts normal to us. Well, his normal. I often forget what outsiders see.

Take for instance; last week, I was getting a couple things at Target and took Matthew with. He was in his stroller (wheelchair) WIDE AWAKE, and the clerk made the comment; "Wow, he is sacked out! What a great way to be able to get all of your shopping done!" I just smiled politely.

And then the other day, Mason had forgot his lunch and I had to run it to him at school. His room is fairly close to the front door, it's a small school, and I was in a hurry. So I didn't put Matthew in his wheelchair. I just grabbed him and carried him in. At the front door, a man I didn't recognize said "Wow, he couldn't get any limper if he tried!" Well. What do you say to that?

I just don't know what to say. Katy, said it in her comments section so well. She said she is not hurt or offended, it makes her feel uncomfortable, and likened it to when people call you the wrong name by accident. I hear these comments so often, that the "human-ness" in me wants to set them straight. But I know they don't mean ill-will to their comments. And I know the right answer is, that I am supposed to use these comments as education moments. I mean, I could pull everyone that says something aside and give them a 15 minute speech about Matthew, but that could be very cumbersome and uncomfortable for the reciever or my message. I just usually smile politely and keep going. I mean, they are noticing him right?? Which it is pretty hard not to notice his amazing cuteness :) :)

I am not ashamed of Matthew, quite the contrary. And I'm not looking for sympathy by writing this. I'm just putting my feelings out there, because, by judging the comments written in Katy's blog; I'm not alone. A lot of us deal with this. And writing is the way I process things. So thank you all , for my free therapy session. :) I think I feel better.

If you have time, read the post I linked to above. Then read the comments. It's a good read. Promise.

Big Brother

Mason is 7 weeks or so into 1st grade, and he all of the sudden has exploded in his reading ability. It is unbelievable. The other day, he found one of Matthew's books, "Silly Suzy Goose", and started reading it to him, while I was cleaning Matthew's room after his nap. It was so adorable. And Matthew LOVED it. We need to do this more often!

Brotherly love. So tender and sweet.

Thank you Jesus, for my sweet boys!

Crafty girl: Part 4

I'll be occasionally updating my "crafty girl" series as I make new little creations. I have a bunch to show off in the next month or so.

When we moved into our new home, I was so excited to have a spare bedroom. We have a place for company to sleep, and, I have my a sewing room. I've been able to do a bit more sewing, because I can leave my machine up and work a little at a time. Before, it sat on the kitchen table and had to be put away when not in use.
Last month my cousin had a little girl. And no little girl should be without a pretty dress. I whipped this little dress up below and shipped it off. I thought it turned out sooooo cute! And it was oh so easy. I can't wait to see her in it next summer!

What do you think??

Church campout

This last weekend, our family (minus Micah, he spent the afternoon and night at a friends house) spent the whole day Saturday out at one of our church's campgrounds with the Adventure club group. Adventure club can best be likened to a Christian form of Boy scouts or Girl Scouts group. It is for 1st-4th graders, and they learn all kinds of things, and earn badges and honors for their accomplishments.

The day was chilly. We got out to the camp early, and had worship around the campfire. Then the kids all went off with their leaders for a scavenger hunt and nature walk. They also took rides on the rope swing. Matthew and I stayed back, and stayed warm around the campfire.

We ate a potluck lunch at the lodge, and spent the afternoon visiting, staying warm and letting the kids play, and work on honors in their groups.

Then evening came and it was time for another campfire (although, I'm pretty sure this fire was lit all day) and a hot dog supper. After supper we gathered for worship.

Oh, how I LOVE worship around a campfire. Matthew loved it, too. He smiled and cooed through the whole thing.

Mischievous grin from the cutest 6 1/2 year old I know!



And then...bring on the marshmallows! Can't be a complete camp fire with out marshmallows!
That one looks a little toasty, Megan





As the sun went down, it got REALLY cold. Matthew and I snuggled in.


And Steve, well, Steve stayed crouched close to the warm fire.....

Roasting marshmallows and dough boys,

and by the judge of Mason's face in the picture below....
snitching someone else's doughboy's too :)

We had a really good time. And when it got too cold and everyone else was talking about "roughing it" in their tents with the forcasted low temperature of 37 degrees, we packed up our goods and our kids, and jumped in our already running van and headed for our nice comfy beds.

WHO?????????..................................

told my baby.....

It was okay to grow up and look like a


Toddler??

What's new in Matthew's world

• Going off the diet has been hard on Matthew. While his Gastrointestinal system thanked us greatly, his brain did not. He was having in an upwards of 25-30 seizures a day. We tried a new seizure med, and it didn't touch them; in fact it made them worse. So we're weaning off that and waiting for some lab work to come back to see what the next course will be for Mr. Matthew. Weirdly, around Wednesday, we saw a drastic decrease in seizures, for no apparent reason. We wonder if his body was going through withdrawals, or if they will pick up again, like they were before.

• Since being off the diet, Matthew has put on over 2 pounds. He is 25 lbs 10 ounces. And I can tell! He is getting HEAVY!
  

• Going hand in hand with the stopping of the ketogenic diet; we have been able to take Matthew off 3 medications he was having to take because of side effects of the diet. That is a very welcome thing!

• Matthew currently has a horrible cold. At first we thought it might be allergies, but now, I've got the sniffles and a sore throat. Bummer.

• Matthew is finally getting teeth! As of last month, he was only sporting 4 little front teeth, and was breaking through a molar. Today, he has the two on top, 5 on the bottom, 1 molar on top that is poking through and the molar on the bottom. The bad part is the molar on the bottom came in VERY crooked. We now have an appointment to see a special needs dentist in December to talk about his particularly peculiar mouth. He doesn't even seem too extra fussy about it.

• We are working on oral feeding again. He currently gets 4 "bites" a day. He HATES silverware, but doesn't mind mommies finger too much, so that is what he is using for his utensils. Baby steps, baby steps.

• Matthew has all of the sudden found his voice again. He is cooing a lot and such a happy guy, even sick with a cold. We went out to a camp out this weekend (more on that later this week) and while singing worship songs around the campfire, Matthew could NOT stop smiling and "singing" along. He absolutely loved it.
  

• We have increased his standing time, and braces wearing time. He is currently in his stander 1 hour a day, and in his AFO's (ankle-foot orthotics.."foot braces") 4 hours a day. He doesn't seem to mind one little bit, and we are seeing the benefits of stretching his heel cords in his braces. We can now get his feet almost at a 90 degree angle. {Tight heel cords are one the things that easily happen to children and adults who are not walking or upright}

• We are in the process of changing home health companies, because our favorite nurse left to go to another company. We found out last week that we too, can change companies and follow her. We are so happy!