Posted in Hershey Feeding Clinic, Kids

Ethan’s Story

As I wait for Ethan’s bus to pull up, I thought it would be a good idea to talk about him today. He was Baby “C”, tying for first in weight at birth at 1 lb 11 oz (with Bennett). He was–and still is–the most active of the kids, constantly moving around and kicking. Now he spends his free time at home jumping on his mini trampoline. He used to jump in one of those “johnny jump up” things that hung in the doorway. Born in late August, we found out he was totally blind in November. I remember not sleeping that night–just laying awake unable to do anything other than stare at the darkness and pray and cry. The next day I went to the NICU and cried and cried. It continues, even, sometimes ,to be a journey of acceptance of the “new normal” with his blindness.

He came home in January, the last of the three. He was on oxygen and a LOT of medication, and from the very start had issues with eating. In March we took him back to the hospital because he was down to eating 6-7 oz PER DAY. They inserted an ‘ng’ tube (naso-gastric, from the nose to the stomach) and he became a very cranky and miserable baby. Two months later, we finally had a ‘g-tube” put in, which went directly to his stomach. Overnight he became cheery again. But he still didn’t eat.

Around 2 1/2 years old or so, he started to eat some baby food and has since progressed to mushed up microwave meals, oatmeal, yogurt and the like–anything that doesn’t require chewing. He doesn’t know how to chew or move his tongue side to side to move the food around. The food literally enters his mouth and goes down his throat.

He continues to get night nursing to handle his tube feedings. Although he eats by mouth during the day, it’s no where near enough calories. So, our summer this year will include a trip to the Hershey Feeding Clinic where he and I will live Monday through Friday and they will teach him to eat. Hopefully enough to get him off his tube feedings. He will miss most of his summer school program, which I am sad about, but this is very VERY important.

It’s going to involve a huge sacrifice on the part of the whole family. Bennett, Laura and Catie will be in full day camp at the YMCA and without their Mommy five days a week. Jim will essentially be a single father, doing both his job and mine. I will be away from three of the kids and my husband for a long time and working very hard up at Hershey with Ethan and the staff. I imagine I will be very lonely. We’re going to set up some sort of webcam system for me to see the family and vice versa.

This is very clearly a situation where attitude can make or break it.

Please keep Ethan and all of us in your prayers. Right now the hardest part is the insurance company and the state Medicaid system. I’m trying my best to work within their parameters, and within their crazy “talk to this other department” system. It’s been very draining. But still, very worth it in the end if Ethan comes home at the end of July able to feed himself and chew and not need tube feeding at all or hardly need it.

Posted in Uncategorized

What our Monday was spent doing


*Editor’s Note: Neither of these are MINE, but both are exact copies of what we had and now have! HELLLLLOOOOOO gas savings!!!

Posted in Kids

Thoughts on Having a Larger Family

We went out to dinner last night. All six of us. That would be the, hmm. third time I think that we’ve done it. It was, by far, the best time. The kids were well behaved, didn’t yell or run around, and only two needed to go to the bathroom while we were there. Ethan only touched one person that wasn’t in our family (and she was very gracious about it, thank goodness!) Plus, they liked AND ate their food! Kudos to Chili’s for their kid-friendly menu! 🙂

Anyways, while we were there I was facing the door, so I naturally noticed the people coming in. With one or maybe two kids. Usually one. Consistently. We were easily the largest family there. It was an odd feeling. I pointed it out to Jim who asked me what I thought it would be like to only have one. I couldn’t picture it. We never had that “oldest” child thing. Ok, Laura was home from the NICU for two weeks before her brothers joined her, but that doesn’t really count!

I may gripe–in my head or out loud–about the amount of children that God granted us, but I can’t imagine life without them. Bennett, my deep thinker and sweet love. Laura, my strongwilled one, who constantly challenges me, but who also has a tender heart and a friendly and kind disposition. Ethan, my snuggle-bunny and comedian, who has incredible rhythm and loves music. Catie, our unexpected blessing, who is friends to all and has a special place in her heart for Ethan (which touches me so much!). Connor, whom I will see in heaven some day, thanks be to God. These are my blessings. I can’t help feel that families that choose to have only one child, for whatever reason, are missing out on so much. I always say that “this is not the life I expected” or would have chosen, had I had the choice. But God has blessed us so much! I hope that I keep that more in the forefront of my brain instead of the negatives!

Posted in Kids

A Reader is Born

I love to read. LOVE LOVE LOVE to read! It was on my short list of requirements for a future husband and yes, he loves to read as well. We don’t often read to the kids–certainly not the 15 minutes/day that the experts recommend, but they see us reading a lot and we do read to them.

Yesterday Laura was at loose ends and I suggested she read a book that I got for her at a sale. She said “But it’s a chapter book!” I encouraged her that I really thought she could read it–it’s considered a Level 2, so it’s age appropriate. She started the book, asked a few “what’s this word?” questions and then took off. I found her later on, with her nose completely buried in it. This morning I had to remind her to put the book down and eat her breakfast. Now THAT’S what I call progress! I’m so excited to have her be “a reader”!

Posted in Kids

Thoughts on Children

Bear with me here, as this will be a stream of consciousness kind of post.

I read a fair amount of blogs. Most if not all are by mothers; some by mothers of many, MANY children. One even has 12. At a time in our culture that 2 is the norm, these women have stepped away from societal expectations and opted instead for what they feel God has called them to. I stand amazed at them. Not in a “let’s read about the freak show” kind of way, either.

I never thought I would have a large family. Jim is one of two and I’m one of three. We figured that we’d have two and then see how we felt about a third. We knew going into marriage that I had fertility issues, although we didn’t know what they were at the time. After conceiving the quads (with some help of injectable drugs but not IVF), we figured we were finished. We lost a baby. We conceived another. I always joke that that was God’s idea, although I truly believe that He knew what He was doing and she was and is an amazing blessing. At her birth, though, I got my tubes tied so that I was, indeed, DONE. Irrevocably.

Now, I have to admit to some second thoughts. Not strong enough to change, but some twinges of “did we play God?”. Not comfortable, that’s for sure. I’m oftentimes at my wit’s end with staying on top of my four, three of which have varying degrees of special needs. I’m thankful that I can enjoy the blessing without the thought of what I would normally consider negative consequences. But again, is a child–such a wondrous thing!–ever negative?

When I eat right and take the drugs I need, I actually sometimes ovulate. I even did it recently, as my body is telling me right now with it’s charming two-week-warning that I now recognize. and a part of me wonders–honestly, with no April Fool’s in there–WHAT IF. What if I hadn’t gotten my tubes tied? What if it had been in God’s plan for us to have more children? What if we were meant to have an even larger family? With children actually spaced out so the older ones could help with the younger ones?

Society would call me insane. *I* would have called me insane even a few months ago before I started reading these blogs and actually using my brain instead of just swallowing what society says. Now, I’m not saying that I’m going to call and get my tubes untied or whatever it would be called. For now it’s enough for me that I’m questioning what the spiritual ramifications are. Plus, I don’t think Jim would be jumping for joy about it.

Posted in Menu Planning Monday

Menu Plan Monday

Ha! I finally was able to get the Mr. Linky to work! Whew!

Menu planning is one of my anal-retentive things. I have an excel spreadsheet, well, ok, I have one for every month of the year and I have them going back to 2003. The first column is the Date, the second is the Day of the week and the Third is what we’re going to have. That way I can look back and see what I had last April and see if anything inspires me (or the opposite–Oh! we hated that!). Anyway, these days our week-days tend to look the same week after week because of the narrow menu the kids will eat. Yes, I just admitted that. But if YOUR kids were as varied in their picky-ness (and texture issues from being preemies) you, too, might have the “Standard Tina Menu” (a quick note: I use R for Thursday. My college did that for scheduling purposes and it just stuck. I love that I don’t have to write Th. One letter is easier!)

M Spaghetti and meatballs, salad and/or carrots
T Eggs and Toast, fruit
W Hot Dogs, mac’n’cheese, carrots
R Chicken fingers, biscuits, salad and/or carrots
F Take Out
S Chicken fajitas
S Steak on grill, potatoes, green beans

Pretty much every M, T, W look the same. And most Fridays I don’t cook, thanks be to God! You’ll notice that the vegetables are fairly consistently carrots. That is the most recent change in our lives. Instead of HATING, DREADING AND GENERALLY DESPISING dinner time with all its fighting and tears (not kidding, folks), Bennett now only has to eat carrots during the week. However, on the weekend he must try one of whatever vegetable we are having. It has massively cut down on the stress. Yes, there is still fighting and sometimes tears, but not about vegetables. It just wasn’t worth it!