trying not to be pissy

We just got back from the nutritionist in Springfield. No, I'm not mad at the doctor. In fact, she is very nice and understanding. I'm trying not to be pissy because Jack hasn't gained any weight since his belly issues. It doesn't surprise me, but I was hoping that he would've continued to gain, even with the poopy problems.
Speaking of which, I had the pleasure of taking a stool sample to the hospital yesterday, per GI's request. I'm still awaiting a call with the results. We're stuck in limbo with Jack not gaining weight until GI can fix the belly issues. The nutritionist wants to find a way to help increase caloric intake but can't until we clear up the belly problems. . .obviously.She was supposed to have the weight and length faxed to GI so they can see that Jack isn't gaining. . .I'm also very very tired right now so I feel like I'm speaking in circles. And, if I am, now you understand why.
I might have to take a walk to Startbucks with the kids. . .  . . . . . .  . .

Being mom to Jack. . .

A day in the life of being mom:
Jack wakes me up at 6:40am, screaming. I try to ignore him so I can sleep 20 more minutes. Nope. I get up, change his diaper, vent him with the syringe, give him his pacifiers, hope he falls back asleep, and...he's up for the morning. So much for a shower while the kids are sleeping. I carry Jack around while I open his medical drawers and retrieve his feed bag and gastric release bag, get his clothing for the day from his dresser drawers, carry the bags and clothes, along with the IV pole (and Jack), to the living room. We get a blanket from the laundry room to place on the floor. We let the dogs outside. On the way back to the living room, we grab the formula container from the fridge. We drop off the formula, and head back to the kitchen to make up the coffee for Jason and myself. We let the dogs back in. Back to the living room, coffee and Jack in hand. "Bye, Jason! Have a good day at work. See you tonight!" I attempt to lay Jack on the floor, only to listen to him scream as he holds onto my shirt. Eventually, I get him on the floor, but he continues to scream, top notch!
I fill Jack's feed bag with formula, prime the tubes, vent his belly once more, and start his pump. I then try to keep him quite ("good luck to me!"), because Evelyn is still sleeping. I think about taking a shower. Jack starts to scream again. I check his diaper, give him books, pick him up, put him down, pick him up, turn him towards me as he tries to throw his body around to me, put him down. No "Today Show" for me. I resort to "SpongeBob SquarePants". Jack is now content. "I'd better run and clean up, quick! Therapist in 1 hour. Evelyn still sleeping. Hungry. No shower. Here I come bathroom sink!
Clean and dressed. I quickly switch the laundry, think about folding it, don't fold it, empty the dishwasher, fill the dishwasher, think about vacuuming the floors, don't vacuum the floors, grab a banana, and come back to Jack, only to see that Evelyn is now awake, laying next to her brother!
"Crap!, the medicine port on Jack's extension came open, again!" I have to change Jack's clothes and the blanket he is on. There is formula and stomach contents all over. I think about calling the manufacturer of the extension to complain that it's come open at least 6 times since Sunday...I feed Evie. She gets dressed and brushes her teeth all by herself. I make the beds and comb Evie's hair. Jack is fussing the ENTIRE time.
Back on the floor. Text from therapist. Running late. Both kids on my lap. Cut Jack's nails. Still watching "SpongeBob SquarePants" and holding Jack. He's reading his book. Evie is finally playing...by herself!
Wish Evie was big enough to refill my coffee.
Jack just exploded while on my lap. (with sarcastic enthusiasm, "yeah"). At least I had the chance to get more coffee! Holding Jack. He's "drawing" on a piece of paper with a pen. He's talking to the TV "Fanboy and ChumChum". We read a book.
"Mom, will you play with me? Do it like this. Do this. Do that. No, Mom! Like this!"
Therapy has been rescheduled for Wednesday morning. Fold the laundry.
Meet with sister-in-law and her youngest child for lunch. Had to turn off the feeding pump to leave. Cleaned out tube with water. Unhooked entire extension tube from Jack's g-button. Nice break from home. Nice to leave the pump at home. All kids good. Had adult conversation. Had real food for lunch. Visit at home for a bit. Kids played. More adult conversation. Nice and partially relaxing. Jack is a good boy for his Aunty, who just happens to be certified in Occupational Therapy and does a little bit of play therapy with him!
Occupational Therapist comes. Good session. Used the KidKart in the house with the tray. Phew! Jack did very well. Jason home. "Hi Honey!" Watch a Strawberry Shortcake movie 4 times in a row. Jack watches it too.
Talk to pediatrician's nurse on the phone about Jack.
Talk to GI's nurse on the phone about Jack.
Uneventful evening. Good dinner (proud of my meal). Jack 'ate' some Apple Jacks! Clean up from dinner. Give Jack a bath. It's very fast. He screams and pulls on my shirt the entire time. Play with kids on the floor. Put Jack to bed. Start Evie in the bath. Pass her on to Jason so I can run to the store ("Hello, me time!"). Get some Target in. Get some Starbucks in. Come home. Make new container of formula. Mix up Jack's medications. Administer Jack's medications. Fill Jack's feed bag with formula. Start his pump. Try, very carefully, not to wake him during this process. There's a 70/30 chance he'll wake up. He sleeps. "Phew!" Clean up kitchen. Fill dishwasher. Set to run at 1am. Avoid human contact for just a moment more. Finish this blog.
The laundry is still sitting next to the dryer.

I just took some pictures from my phone and I wanted to share them with all of you.

One picture is of Jack sitting in a restaurant high chair! I was so surprised that he did it! And he didn't seem to mind. He lasted for about 10 minutes!
The other pictures are of Jack (and Evie) at McDonald's eating french fries. Jack just started getting interested in food again. He put a Coco Puff (it's about time!) in his mouth. Of course, he spit them out once soggy, but still. . .We went through 5 french fries at McDonalds. Jack didn't actually eat them, but he did chew them, and each one was VERY soggy.
What a nice change.

We still had the other issues, but I wanted to share something nice for a change!

communication

It's Monday morning around 8am. Jack and I are in our living room, both of us on the floor. Jack is on his blanket, hooked up to his feeding pump, which stands directly behind him.
He tried to communicate with me a few minutes ago. He made some silly sounds, waved his hands, made the 'where' gesture,  wiggled his fingers around while tapping them, and then pointed his index fingers at each other, which means 'hurt'. I asked him several questions, mentioned some objects and feelings, and he just kept trying...It's so sad when Jack tries to communicate with me and he doesn't know what to do and I can't figure out what he wants. I've been trying to teach him how to say 'yes' and 'ya' in words and how to nod his head, 'yes' but we haven't been successful yet. . .

Frown.

More changes. . .

Hi. Here are a couple of pictures from today. Aren't they cute?! I'm happy that they turned out with the life we've been having lately! Jack has decided to give us some new challenges lately. I'm not talking about his belly.
Imagine having a baby/toddler that is afraid to be picked up, put down, rolled to the side, put in a sit position, moved from one hip to the other hip, placed on your lap facing outward. Jack trembles, gets a very scared look on his face, gives a scared-sounding cry, and clings to me like he's about to fall 20 feet. It's gotten worse as the days go on. His odd facial spasms (since we don't know what that is) are happening more and more.
Jack's Physical Therapist and Occupational Therapist, both on different days, mentioned Gravitational Insecurity and Positional Insecurity. His OT said that it could be either vestibular (but she doesn't see how it could be related to his inner-ear), related to his head, or simply another sensory processing issue. The OT was stumped. The Speech Therapist wants me to call the Pediatrician to let her know of this new problem.

Oh, and by the way. . .Jack had his Speech Therapy evaluation. Jack will be receiving Speech Therapy as well. We'll be using a communication device to get started with ways to tell us what he wants.

and the news for the week. . .

I am tired! I am tired of listening to a screaming Jack, morning, noon, and night. I am tired of watching Jack his his head and face. I am tired of listening to Evelyn whine,whine, and whine some more. I am tired of being tired all of the time from not getting much sleep.
Thanks for letting me get that off of my chest! Ok. We, in all seriousness, were almost killed yesterday in an almost fatal car crash (not our fault, and I'm happy I saw it coming). We were on I-74 in Champaign-Urbana, heading from an exit 184 to an exit 181 to get a late lunch. Way far ahead I saw a ton of cars with their brake lights on. It looked like some major traffic. I started to slow, very early, to a point where Jason was asking, "Are you ok?", and I was like, "There are a ton of cars up there with their brake lights on!" Well, as I was getting to an almost stop, this blue pick-up truck came at the back of our van full speed. I thank God that I looked in my mirror and saw him coming right at me, and I quickly moved the van to the right as he swerved to the left, nearly hitting me, and several other cars behind him swerved. I could hear tires screaching all around! Thank you God for being with me and my family. And thank you God for making everyone else in the van unaware of the situation. We exited and I calmed down. My entire life with my family was flashing before me. What a scary experience. I love my family. I know we have a lot of stress and tend to get overwhelmed lately, but I wouldn't trade them for the world.
On a lighter note, Jack has decided to skip naps two days in a row, stay up screaming until 11pm, and then wake up several times screaming over night.
We add Speech Therapy to our services this week. Evelyn will start a dance class in 4 weeks.Her gymnastics starts in 2 weeks as does school.

little talker

I should be sleeping. . .but I'm not.
I thought I'd share some of the new things Jack is 'saying'. The words are broken, but I know, in my heart, what he means.

We walked into our book store at the mall, and Jack says, right away, 'ook' (book). Then directly after, 'meh ook' (ma/my/mom book). He points up at lights, and every now and then we hear, 'I' (light). He has also been sticking out his tongue while trying to say things. I hear a lot of 'ma me mom, mal, ba, ook, ool, da, dee, dad, Evie, mo (more)' etc etc etc etc etc.
He even goes crazy with his hands when he really wants to say something but doesn't know what to do.
Luckily we'll be seeing a speech therapist very soon. Can't wait to figure out all of these words!
He reaches for me or touches me to ask for help. He waves his hands and claps when he's crying if his belly hurts from all of the gas. He stopped hitting his head as much. Phew. He points to tell me where he wants to go, especially if he wants to touch something. My favorite silly thing Jack does lately? He reads a book with his feet. He literally turns the pages with his feet!
Oh, and I'm still having the belly gas issues. We're going on day 6 with the medication.

Evelyn and I were just looking at some pictures from www.cfcsyndrome.org and were looking at the boys that resemble Jackson. Here's the link if you'd like to take a look. So amazing how these little angels look so similar.
CFC International pictures-confirmed cases

The newsletter also came out recently. I've posted that link here in case you'd like to read up on any new information regarding CFC International. CFC International Newsletter-July 2010

Jack slept through the night last night, Monday. Phew! He's been fussy most of the day though. We're back on the antibiotic and I've also given Jack some ibuprofen to help him sleep. Massive amounts of gas have been exiting from his belly. On a brighter note, I'm now waiting for insurance to pay for Jack's Ergocalciferol. Ha! Can you read that? Ur-go-kal-ciff-ur-all. That's a fun one when I tell it to a nurse and she's trying to write it down. I usually end up spelling it. This medication is the vitamin D2 supplement. It's been working great but now we need a refill, and it's $102 for a 6 month OTC supply. It's a medical necessity because Jack's levels are low when he isn't getting the medication.We are waiting for insurance to receive a letter of medical necessity, and send us, as well as the pharmacy, the approval. Ugh. . .

That is all. Oh, and we met the family down the street with two boys, the same ages as Evelyn and Jackson. The younger boy has Down Syndrome. The family was/is wonderful! We have so much in common and the kids all played well together!

needs more meds. . .hope it helps

So Jack has been off of that antibiotic, Flagyl, since Wednesday evening. I just picked up another script of it for a 2 week round. And, Jack's symptoms have been returning. They were better than before the original meds started but still occurring. Now, they are getting worse again! Jack screamed for 3 hours last night 7-11pm. Then from 2-3am, and again around 5:30am. Lots of gas coming up again. So. . .back on the meds we go.

Praying they get better.

Jack in a Box