We've had quite a week here in the Waddell household.
Monday was the trip to St. Louis for the GI follow-up/ upper-GI/ hopeful diagnosis of the belly issues.
Tuesday was my father-in-law's third surgery since his work accident in September. This one involved his shoulder. Tuesday was also Evelyn's last mini camp at our Forest Preserve, Jack's Physical Therapy session, and Evelyn and Jack's appointments at the pediatrician. Evelyn's appointment was wonderful. Just a well-child. She's 3'3. Jack's appointment went ok. His pediatrician put him on a probiotic. So he's now taking the antibiotic Flagyl and a probiotic, all to help his belly, which is better than it was. Still lots of pressure, but nowhere near as much. His pediatrician was a little concerned about Jack's head circumference, comparing it to past measurements. We'll be getting it measured again in 6 weeks, by the same nurse. The concern is the risk factor of getting hydrocephalus/water on the brain/too much fluid. We're just under observation. I'm not too worried. I'm more concerned about Jack's belly. Oh, and Physical Therapy was TERRIBLE! Jack hasn't wanted to sit up for almost 4 weeks now. Pretty much right in line with when his belly started to bother him.
Wednesday was a nice break. We had some family time.
Thursday involved Evelyn's gymnastics class and Jack was the focus in the afternoon. Jack had Occupational Therapy and his 6-month review for his Early Intervention Services. Occupational Therapy was TERRIBLE. Same as before. No sitting up. Not wanting to work. No interest. Just screaming. However, when we had what I call our 'party' (physical therapist, occupational therapist, Division of Specialized Care for Children coordinator, and Child and Family Connections Coordinator, minus the developmental therapist), all in our living room at one time, talking about Jack and his evaluation scores, Jack was fine and dandy! He was even playing with his toys and talking a little, of course while lying on the floor. How were his scores: much improved, if we don't look at the numbers, from the past 6 months. He reached all of his goals for occupational therapy. His skills in this area are poor for his adjusted age of 16 months (because he was 6 wks premature). We are very please that he met all of the goals that were set 6 months ago. Regarding Physical Therapy, Jack made descent progress. He is sitting. That was our goal. His gross motor skills are delayed, but we knew they would be. His overall age equivalent for physical therapy is 9 months. However, we know that Jack will do things when he wants to. We can't compare him to other children. Our next goal is weight bearing. I'll show you pics later on in this post. For Developmental Therapy, Jack is doing very well! There are a number of developmental tasks Jack is performing at a great level! With that adjusted age of 16 months, Jack is performing several areas between 12-14 months. There are some that fall to 6 months (gross) and 10 months (cognitive), but I'm not worrying about that. Jack is a doll!
And the there's Friday. Friday was the big day. Jack got his AFO's (Ankle Foot Orthotics).

Notice the coffee mug, pen, and paper, in relation to the orthotic! It's so teeny tiny! And, yup. That's Spider Man! He tolerated the orthotics very well for the 1 hour today. Tomorrow we move to 2 hours.

I won't go into the probiotics flying across the room via syringe.

on the road again. . .

So my mother-in-law and I, along with Jack and Evelyn, made a trip to St. Louis Children's for a scheduled appointment. This appointment? All of these belly issues Jack has been having, along with his 6 month follow-up.
Jack had an upper-GI, which involves eating barium and then getting an number of x-ay images to watch the barium move through the gut. We also saw the GI specialist. The results: there is no blockage. Phew. I didn't think there was. But we still don't have an answer. We were given three possibilities for the massive amounts of gas.
1) Jack had a viral infection and the gas is a leftover result that will clear up on its own.
2) There is too much bacteria growth in a part of Jack's intestines. He has been prescribed an antibiotic to try this theory.
3) Jack is swallowing air, which is common in kids with syndromes (I didn't know this) and his speech therapist can help with this

So, yet again!, we don't have an answer yet. . .argh!!!!!!!!!!!!!!
Thanks to my mom-in-law for coming on the trip! She made the trip manageable during the appointments, and definitely helped keep me entertained during the drive!

So, we got back from our trip Wednesday evening. Phew. The trip seemed longer coming home, which is odd. I always thought that trips back seemed faster! This is probably because Jack fussed a lot, Evie wined a lot, my shoulder was very sore, and Jack pooped twice! I still don't understand why Jack likes to poop in the van!

The trip was great! I am so proud of Evelyn! She went on kid water slides, swam, and was very independent! I am also very proud of Jack. He, with much effort on my part, went in the water. . .several times! I had to hold him close to me, and his cuddled very close, but I was able to get him in the water! Jack slept pretty well on our make-shift crib. Other than the usual fussing over night, Jack didn't do anything different. He even stayed awake late, all stubborn and playing! Boy, oh boy, was Jack happy when we put him in his crib last night! He was bouncing and giggling!

Here's our concern. For the past 3 days, Jack has been hitting his head when mad or in pain. He's also been hitting me and throwing his body when we hold him. The plus side of Jack's attempts at communication is that he holds up his tube when he wants is vented. I don't like the head hitting. I don't know what to do about it. He hits himself really hard! Last week we was pulling at his hair when he was mad. Now, he's hitting his head. Does his head hurt?!

Oh, and no change to his belly/gut issues. Jack will be having an upper-GI performed Monday morning and then he sees the GI specialist Monday afternoon. I'm not sure what they are looking for, but hopefully we come up with a cure!

Our First Family Vacation

We took our first family trip. We've been at the Great Wolf Lodge in Kansas City, KS. It's been a good time. We met with two other families who have a child with CFC.

This is a picture of us with Meg. She's 12 and has CFC. 

Jack went in the water. I kind of just made him. He did alright as long as he was in my arms, cuddling the entire time.Here's some pics of our room. 2 queen beds and a sofa sleeper.Evie went down the kid water slides. Her favorite part was the hot tub!

This is part of the Wild family. They live in Kansas. Owen is on his mom's lap. He's 6 and has CFC.

We ended up making up a bed for Jack instead of using the pack 'n play. He loved this!

love it!

It's been 6 days since the big event. Jack seems to be slowly recovering. I still haven't been able to get his rate/hr back to where he was, but I'm 'sort-of' close. I'm down by 1/2 oz/her, which isn't too much, I guess. Jack is still coughing...a lot, spit-up a couple of times, and has been fussy, but is remarkably better! Really. He's been such a ham when his belly isn't bothering him!
He now says/signs/waves 'bye-bye'. We got back from the store last night and I went to take Jack out of the van, and as I opened the door he said 'bye' like he wanted to go out some more!
Jack had Physical Therapy on Tuesday and did some amazing things! He bared weight, lifted his legs in a walking motion, and bounced! I had tears I was so happy. I only got a small portion taped.

3 sticks

Hi. Ok. So the day has been quite interesting. I ended up calling the Pediatrician's nurse and the GI's nurse late this afternoon. You know how Jack vomited in the middle of the night? Jack started the morning with Pedialyte after having no food for the rest of the night after our fun event. Oh, did I tell you how I forgot to turn Jack's pump on Tuesday night and Jack went from 9:30pm-6am without food? He wasn't happy and I had to toss about 20 oz of formula that sat in the feed bag over night? Anywho. . .Jack had MANY screaming fits today, and a lot of coughing. We had to stop his feed a lot to vent him too. While Evelyn and I were at an appointment, Jason was having some Daddy-time with Jack. Jack screamed and screamed about an hour after his feed started. Jason ended up stopping the feed and vented Jack. The large syringe filled up from all of the formula in Jack's belly. Jason had to empty the syringe in the sink before it ran over (it holds 2 oz) and hook Jack back up. The syringe continued to fill up part way and then a TON of gas came out. Jack only ate approx 3 oz. Why didn't he digest it? Usually, I'll vent Jack after a feed if he isn't on that farrell bag. Only approx 1 oz will come up and then go back down into Jack's belly. Jack was on the farrell bag before this happened with Jason.
Slight change of subject: Jack had his evaluation with his Occupational Therapist today. They have to test him at a 16 month level, even though he's 18 months, because he was 6wks premature. He did very well. He met most of his goals over the past 6 months! He wasn't able to do many of the goals for a 16 month old, but he tried and tried. So cute.
Ok, so we took Jack to the local hospital for some labs and an abdomen x-ray. It took 3 sticks to get a draw. The nurses were able to get a vein but the blood wasn't coming. I think Jack might be dehydrated. Poor little guy. His voice is even hoarse from screaming so much today. He's on Pedialyte all night, or until he runs out, and then I'll start the formula back up. I've started his rate/hr on the pump to half of the usual. It's gone up 10 so far. I'll bring it up again in about an hour. I'm praying that he'll tolerate this and his tests will come out just fine.

Something is wrong. . .

Ok. Something is wrong with Jack. There has to be. Too many signs. He had a massive vomit explosion again last night around 12:30am. He lost EVERYTHING. It was a terrible mess. He was so pale during the event.We're still having those coughing and gagging fits as well, for about 3 weeks now. Yah, he had that last massive vomit on the 26th. Oh my gosh. . .what's wrong? I vented Jack's belly with his big syringe (for those who don't know, venting is burping, by way of g-tube) after he stopped vomiting, and a TON of gas came out. He's been pooping, about once a day, still diarrhea. He coughs all of the time, like so many time per hour, what's the point of counting! If you've been following the blog for a while now, you'll know that Jack+cough=high possibility of vomit.
Do I call the doctor? Why? What am I supposed to tell them? He doesn't have a fever. We have an appt on the 27th.
argh!

doesn't have the stomach, totally understand

Did you know, if you receive this via email, that you can click on the title of the blog and it will take to to the blog page?

Today has been quite the day. Jack's been a ham all day. I actually said to him at one point, "Did I feed you some ham this morning?" He was laughing at just about everything, when he wasn't screaming of course! Jack spent yesterday and today outside in his pack-n-play. He seemed to enjoy being outside, in the shade. NO SUN! Boy oh boy does he let us know when the sun gets to him! He also wiggled himself about 4 ft to his Fisher-Price piano. Jason sat him up once he noticed that Jack was banging on it with his feet. Jack was thrilled! He even pushed us away when we tried to bring him to the table for dinner! Of course, a short while later Jack was peeved that he wasn't with us! I LOVE IT! I love how Jack can tell us what he wants, needs, etc. . .He was determined to play with the piano, and he did!

What else. . .oh, I finally had to change out Jack's mic-key button. Jack's stoma, the site where the button enters Jack's body, has been leaking formula and fluid for several weeks now. I've been intermittently checking the balloon, the part that is inside of Jack's belly and keeping the button from coming out, and it keeps losing water. Not much. Not much at all, but enough to cause leaks. There's also been some blood at the stoma. I may have to call the doctor about this. . .now that I think about it. I wonder if the stoma has stretched and that's why he's leaking. . .but the blood? Dang. . .this is what I get for sharing! Booger!
Oh, and the title of the blog. . .that's because my amazing hubby helped hold Jack's hands down during the button change, and nearly vomited because he decided to look at the stoma after I removed the button...and a bunch of formula came directly out of Jack's belly. . .

I think I've shared enough!