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!
  

Would you join me...

In praying for a sweet little family that I have come to "know" over the past weeks? An aunt of a child born with hydrocephalus contacted me telling me about her sweet niece, Seeley, that had been born in Omaha 10 weeks ago. She found my blog through Michelle's blog and we had been emailing back and forth for the past 8 or so weeks. Recently Seeley's mom, Lori, had also commented on my blog. They have not had the most positive stay in the NICU, but after 9 long weeks, the plan was to do a g button/fundoplication surgery and she would be able to go home within a couple weeks. I was cheering with them.

The surgery was Monday, and I recieved an email from Seeley's aunt today saying that Seeley had contracted an infection from the surgery and went into cardiac arrest early this morning.. They were able to bring her back after 45 minutes, but the damage has been done, and they have said that Seeley is now "brain dead. The parents will have to make the decision to let her go. This absolutely breaks my heart. It reminds me of how quickly things can change.

If you are so inclined...would you join me in praying. I know the family would greatly appreciate it!

Okay....

....so I haven't updated in a while. Some times it feels like the longer I take between updating, the harder it is to blog again, and with facebook it is sometimes easier to give a 3 sentence update and be done. Anyway...
{disclaimer: there is much talk of mucous, vomit and diarrhea in this post. Continue reading at your discretion}

My last post was on the 7th (a Tuesday). Matthew was still doing a lot of vomiting Wed. and Thurs. and then when I came home from work on Thursday evening, Matthew started vomiting again. I went in his room and he was throwing up blood. And he couldn't stop. Then he started having diarrhea, and within a hour and a half he was still vomiting blood and there was also blood in his stool. We called his GI doctor and he told us to head to the hospital. We went to Omaha, and once we got there he continued to vomit for over 2 hours. It was horrible. His feedings were still going in his J tube (his small intestine) so it didn't make sense why he was vomiting. They had me stop his feedings anyway and they started IV fluids. We were admitted in the early morning hours on Friday. It was decided on Friday to let his "gut" rest for 24 hours and see if the vomiting subsided. Like magic, about 2 hours after the feedings were turned off, the vomiting subsided and he was able to rest most of Friday.

• Saturday: the decision was made to start pedialyte to see if Matthew's body would tolerate that. Things went perfectly. No vomiting, and he was happy.
• Sunday: During rounds we decided it was probably best to try to take Matthew off the ketogenic diet. We had made a plan with our Minnesota Epilespy docs that this would be our next step if the vomiting continued. Within 1 1/2 hours after starting the formula that would be used to help wean him from the diet, Matthew started sounding very mucousy in his throat and then he started vomiting. The diet was stopped again, and pedialtye restarted. The doc's decided Surnday evening that we would start 1/2 strength "weaning formula" 1/2 strength pedialtye. All evening and night he was so mucousy and started having diarrhea again. I spent most of the night suctioning his throat so he could breathe past the mucous. In the morning, he starting vomiting again.
  
• Monday: With the start of him vomiting again, his food was again stopped and pedialyte started. How frustrating. I'd done some research on soy (which is the main ingredient in his formula) and everything I read said that increased mucous was a sign of a soy allergy. I couldn't get it out of my head that maybe was allergic to soy and that is why we've always had such issues with vomiting since the start of the diet. And especially since it was now going straight into his intestines and not mixing with stomach acid that maybe it was really affecting his body. So I discussed this with the GI doc's. They only raised an eyebrow at me. They didn't quite believe me or buy my idea. I didn't care though. It made sense to me. They did think it would be beneficial for us to try to go off the ketogenic diet cold turkey and try a "elemental" formula. This formula has no soy or dairy added, and the proteins are broken down to help him digest them. They would start 1/3 strength in the evening. The rest of Monday went well. He did well on the new formula. No vomiting, no mucous.
• Tuesday morning we went to 2/3 strength formula. The doctors said if he would tolerate this, he could go home. Six hours into the formula, he was doing beautifully. We got to go home.

The only bad part now, is we are seeing a LOT more seizures. Which in a way is good, because I was questioning whether the diet was working (it was doing some good...boo that we can't go back on it...as far as I know, you cannot be on the keto diet allergic to soy and dairy)

We have started a new seizure medication to help with the seizures, but it will not be up to full strength for 3 weeks. It's hard to see him have up to 15 seizures a day. The weird thing is though, that he is SOOOO happy now, he is vocalizing again, which he had all but lost on the keto diet (I don't understand that, but we do know it not a "vocal seizure"; he is doing it response to us talking with him)

We have seen essentially no vomiting. The last two days, in the morning, he has vomited, but it is quick, and he doesn't continue on for 20 + minutes.

Matthew's arm is doing much better. It is still sore, and you have to be careful how you touch it, but he has been wiggling it out of his little homemade sling, so we made the decision today not to use it anymore. He seems to do okay with that. We aren't having to give him pain medicine around the clock either.

Matthew started private PT up again this week. I will try to post about that later. I think it's a good fit. I was nervous about starting outside therapy again, but I think this will be a benefit for Matthew.

So that, I believe, is all of our life updates for the last week and a half. I promise, I will try to post something next week that doesn't have to do with hospitals. I am tired of living there, and I think Matthew would agree :)