Testing

Sooo.....just when I think I've seen it all....
Noah woke up this morning with a very strong maple syrup smell coming from his diaper, skin, and hair. So much so that I thought I would question the therapists about it thinking that maybe there was something in his food yesterday that would have caused it. I really didn't think too much else about it, but when we got to the hospital, everyone within a 5 foot radius commented on how he smelled like pancakes. In fact, the entire ROOM would smell of maple syrup after he was in it. I called Jeannie at U of M and, like always, she went right to work on what could be going on. The immediate thought was Maple Syrup Urine Disease, something with the bodies inability to break down protein.., but his newborn screening was negative for this. She said he would need to be seen by a pediatric geneticist and soon! Luckily there was one on staff at St Mary's and he was immediately sent for blood and urine tests to look for metabolic disorders. He did so well with the blood test and as far as the urine, they had me put a u-bag on him and I am still waiting for a specimen! He would have done okay with that if I hadn't accidentally stuck things together that shouldn't have been and had to adjust it a few times (some things should be left to professionals!). It will be 5-7 days before we really know anything and at this point, all I can do is speculate, which gets me no where. I contemplated even writing about it all until we know more and then decided against it...a few extra prayers sure couldn't hurt! I am wondering if maybe this is in someway related to his edema issues as well. He gained a pound this week and I am sure that some of that is fluid related.
Before all of this syrup smelling business, we had been talking about scheduling an upper GI and swallow study to be completed before we leave the feeding clinic so we can get a better idea of what is going on with his stomach. He is doing better with the retching, but we have been keeping him at right around 3oz total for both food and formula. No sense in pushing him over the edge. He is doing so well with the food! We have had a few major meltdowns during sessions the past few days, but seriously, with everything else going on, I can't say I blame him. Plus, they are phasing me into the session and having me do 2 a day, so he seems to try and test me as much as possible. Typical 2-year-old!
We are heading home for the Thanksgiving holiday tomorrow after therapy, but I will update if I hear anything about his test results!

Schedule

A few people have asked what our daily schedule here looks like, so since I have free time (lots of it!) I thought I would put it on the blog! This is what our schedule will be when we get home as well..
7:00am - Continuous night feeds shut off and Noah gets up
8:00am - Prevacid
8:30-9:15 - Morning session (breakfast) 15min of oral motor and chewing exercises, 30min of eating. (Goal - 2oz formula,.5-1oz of baby food w/oil and polycose)
9:15 - 10:15 - Playtime!
10:00 - Zantac
10:15-11:00 - 2nd morning session - 15 min of oral motor and chewing exercises, 30 min of eating.(Goal - 2oz formula,.5-1oz of baby food w/oil and polycose)
11ish - 12:45 - Breathing tx and nap time (or lack there of!) and lunch for me!
1:15 - 2:00 - 1st afternoon session (lunch) - 15 min of oral motor and chewing exercises, 30 min of eating.(Goal - 2oz formula,.5-1oz of baby food w/oil and polycose)
2:00 - 3:15 - playtime!
3:15 - 4:00 - Last afternoon session (snack) - 15 min of oral motor and chewing exercises, 30 min of eating
4:00 - 5ish - Free time
5ish - 6:00 - Dinner session w/me at hotel - 15 min oral motor and chewing, 30 min of eating.(Goal - 2oz formula,.5-1oz of baby food w/oil and polycose)
6:00 - 7:15 - Play, bath, breathing tx, Prevacid
7:15 - Bedtime and start continuous feeds
10:30 - Zantac

I know it seems like ALOT of time in the chair eating, but really this time is so laid back for him and he gets to play and watch movies for part of the time. He is constantly engaged and for the most part, happy during his sessions. The food and formula is offered about every minute, sometimes more frequent, depending on his tolerance. It is offered in rotation, bite, then drink, etc. They are encouraging us to keep our routine as consistant as possible when we get home. It takes him 30min to take 2oz of formula, so if we miss a session, he has to be bolused. The meds are strategically given throughout the day to try and keep his stomach as neutral as possible and the Prevacid especially, has to be given on an empty stomach. I have to check the residual in his stomach between each feed to determine the amount he can handle for the next one. 3oz total seems to be his limit at this time.
Hope this didn't bore you to tears! Have a great weekend!

PS. Sue, mom to Emily LCDH 1-22-08, feel free to email me so we can chat!
carrielynn999@hotmail.com

It's not easy being 2...

If only I would have had my camera....Noah threw the most impressive temper tantrum I have ever seen from him today. Why? Who knows! The after nap slump escalated to a "throw myself on the floor and kick and thrash all of my appendages". It was quite amusing. We let him lay there and talked amongst ourselves for awhile. Finally he contained himself enough that I could put him into his chair for the session. He proceeded his tyrant and refused to swallow his food. After working himself into a frenzy again and a huge retching episode, it was as if someone flipped a switch and was sweet as sugar once again. They didn't try and force feed him, they just stopped the timer and waited for him to stop his crying and then began feeding him again. Ahh the joys of a two year old. Every now and then, it's great to see him do something "typical", even if it is a temper tantrum.
They introduced bananas yesterday, and peas today, still stage 2, but fortified with olive oil and Polycose (a simple carb that adds extra calories). Tomorrow is another weight check so I am hoping to see an increase! Yesterday he started his "weird random swelling" that he has had in the past. It starts in his fingers, then his hands and face. We thought that it was his formula before, hence the switch to the protein free specialized formula, now we don't know what is causing it. Last time the swelling escalated to the point where he stopped having wet diapers, so I am glad that if it had to happen again, it is happening now, so they can try to figure out what is causing it.
I have noticed that he is starting to put things in his mouth again, such as toys, fabric, etc. They said that this usually happens with kids once they start eating and decreasing the oral aversion. They said for us not to discourage it and eventually he will stop. Much like an infant that is exploring with their mouth, Noah is doing the same thing, only a little later.
Rumor has it, they will try to feed him pumpkin next week in honor of Thanksgiving!

Week 4!

Noah's goals remain close to the same as last week and they hope to continue to increase in volume and work on chewing and strength exercises. He has been introduced to a variety of different foods, all Stage 2 baby food, to include: squash, apricots, apples, pears, sweet potatoes, and rice cereal. Each food is boosted with powdered formula for extra calories. He is currently averaging 1/2 oz of food per session for a total of 2oz a day. His formula is still being offered via squeeze bottle and he is averaging just over 2oz per session for a total of 8-9oz per day. Volume is a huge issue and it seems that the closer they get to 3oz of total food and formula, the more retching and gagging he has during or after the session. They have increased the dose of both his meds and we are giving them at 4 seperate times throughout the day to try and spread it out as much as possible. His weight is still the same, and we may have to add a simple carbohydrate to fortify his formula ever further. Today they tried offering the squeeze bottle for him to hold and facilitate his own drinks. He did so well with it and was able to get about 2grams per sip, by himself! I am so proud of him!
Noah and I went home this past weekend and it was great to see the boys and spend time together! Of course there was the usual fighting and protest over this, that, and the other, but that's all a part of being home! Elliot seems to be feeling a ton better and has adjusted to his rather abrupt wean and switch to formula quite well. Zane is doing great and kept me entertained the whole weekend as usual. I just love his imagination and energy!

Wrapping up week 3!

It's hard for me to imagine that 3 weeks into this program Noah would be sitting in his chair, drinking an average of 2oz and eating up to 1/2 of baby food per 45 min feeding session. Looking back to week 1 when they were simply working on opening his mouth for an open spoon and getting him used to their touch, he truly has made so much progress in 3 weeks time. Seeing that his weight gain is still an issue, they have now been mixing some powdered formula into this food for an extra boost as well as the introduction to rice cereal mixed with applesauce. He has a hard time with the cereal and tends to gag with each bite. We think that it is just thicker and tends to coat his tongue giving him an uncomfortable sensation. Even though he gags, he is still not refusing the bites. He is still getting his nightly 10hour continuous feeds, but I have only been averaging 1 bolus a day this week because he is eating and drinking the rest! An average of about 360 calories a day by mouth!Amazing! We will just continue to work on strengthening exercises and chewing and keep trying to increase his volume that he is taking. Once he picks up the volume, we can start chipping away at the continuous feeds. He is still having episodes of pretty bad retching after some, but not all, of his sessions. Dr Clawson strongly feels that his stomach is unusually acidic and could be the cause of his tubes going bad so quickly. She thinks the stomach acid is simply eating away at the balloons. We may be increasing the Prevacid again.
He has made major improvements with his speech. Since we have been here and they began the stretches and facial exercises, his vocabulary has easily doubled from around 25 words to 50! Today, he actually called me "Mom", not the usual "Maaaaaaa" I would get from him, but very clearly, "Mom". Music to my ears!
We enjoyed a great visit from Granny Ogle yesterday! She was kind enough to drive here from Ohio and spend some time with us as well as observe Noah's therapy sessions for the day. We also had a great dinner with friends Dave and Earline that live just outside of Evansville. Thank you so much for your kindness, we had a great time! Noah actually drank almost 2oz of water from a cup and straw and repeatedly asked me for bites of soup and bread. He sat in his chair for the entire meal without protest and had no episodes of anxiety when anyone talked to him. He has come such a long way in such a short time!
We are so lucky to have such an awesome support system of friends and family. I just can't say it enough! We have many, many blessings to be thankful for!

Sweet potatoes with a side of drama...

Last night was a very long night. Elliot woke up around 10pm and was up crying the rest of the night. I couldn't console him for anything! (they love us here at the StudioPlus). He didn't have a fever, so I chalked it up to teething and shipped him off to daycare this morning. Lo and behold, a few hours later, I received a call saying he had a fever of 102. The great thing about being in the hospital all day long, you know people that can pull strings! The feeding staff told me to bring him back after I picked him up and when we got back, they had Elliot an appt with a pediatrician! Poor Elliot has a pretty bad double ear infection and a sinus infection. Since he's been harboring this goodness since last week, they brought out the big dog antibiotics. Hopefully he will be better in a few days. Sadly though, this has bought him a one way ticket back to Ft Wayne. We had been contemplating this after seeing how well he did at home last week and the fact that he is so miserable here. Plus, being sick again, he would have to go back home for the week anyway, just to start a whole new adjustment next week if he came back. I hate being away from Zane and now Elliot, but I do feel better that he will be home - happy, healthy, and being loved by Daddy, Grandma Ogle and Grandma Baker. Who needs Mom when you have that army? Brian hit the road shortly after the call from the daycare and I met him in Vincennes for the trade off. Noah and I are back in Evansville...Elliotless :(
As far as Noah's day, they started him on Stage 2 sweet potatoes. He did okay with it, granted the day was cut short. The first session was the best, but the second he was trying to wipe it off his tongue with a towel. Sneaky, sneaky. Although short, the day was a little better for him than yesterday...oh, until he came home and his g-tube came out again. Thankfully we had a spare on hand. I don't know why they keep going bad on him. He has been through more tubes than I can count in the past few months! They are still working on lots of chewing exercises to strengthen his jaw when we start texture grading. They suggested lacing the puree with powdered Elecare for a few extra calories. They don't want to start adding butter, oil, or supplements until his stomach and digestive system can start to handle a little more. We will continue to increase volume of formula and food per session and keep trying to stretch his stomach little by little.
Back to a full day tomorrow, barring anymore unforseen catastrophies! We are looking forward to a visit from Granny Ogle!
Keep the prayers coming for little CDH'er Jamie, he is doing so much better every day! Also, please add Gabe and family to your prayers tonight. He and his family are going through an unimaginable hard time right now. They need prayers for healing and justice!

Good day, Bad day, depends on your perspective

Noah DID start stage 2 baby food today! They didn't tell him any different and started the first session as usual. He has been opening his mouth for a spoon with formula on it in rotation with the squeeze bottle, but this time, the spoon was dipped in Stage 2 applesauce. The first bite he shivered and gagged, but didn't rake it out of his mouth like I had anticipated! In fact, over the course of 4 sessions his total applesauce intake was 4oz for the day! Awesome, awesome, awesome! Every bite was beautiful to me!
The downside...his formula intake was not the greatest. His volume was down a bit and he was protesting every drink. He cried, begged, spit out, gagged, bit the straw, and blocked with his teeth, you name it, you tried everything he could to avoid his drinks. He cried for every session and for kept pleading to be done. His formula actually tastes very good, almost like vanilla cake batter. We aren't sure why the sudden change, and they are chalking it up to transition. It's Monday, and those can be difficult for all of us!
His weight was down again today, so I am not sure what that will mean in terms of changes or volume increase. Dr Clawson is going to give him another few days to adjust to the formula change as we are on 100% specialized for bolus and continuous feeds and have phased out the Nutren Jr completely.
Elliot was back to daycare this morning, and he voiced his displeasure numerous times. He must get his stubbornness from his brother. Notice I didn't specify which brother!
Hoping for less tears tomorrow!

Family Weekend

Brian, Zane and Elliot came to Evansville this weekend, and I don't think we could have packed anymore in if we tried! The best part about them coming down for a weekend is that we aren't in a hurry for anything, other than when the kids need something or Noah's feeding schedule, we can take our time with everything. They got here late Friday night and we just hung out till bedtime. Saturday morning we got up, went for a walk, had breakfast, and then set out to explore downtown Evansville. We parked along the Ohio River and walked for awhile just enjoying the scenery. Not to mention that it was 74 here this weekend!! We stopped at a huge playground and the boys had a great time there. Zane and I toured the LST 325, a huge WWII Navel ship. Our tour guide was a seasoned WWII Veteran and had some great stories. Zane's eyes were as big as saucers the whole time. (Zane said the guy spit on him 3 times while he was talking, but Zane just wiped if off casually. Zane said "he has the nicest teeth I've ever seen, I just wished he realized he spits when he talks") We had a great dinner and then popcorn and movies after the little boys were in bed. Zane and Brian had to head back to Ft Wayne this morning. Elliot is feeling better so he was able to stay this week. I hate seeing Brian and Zane leave, I know I will see them again next weekend, but I hate being away from them!
We are hoping to introduce Noah to stage II baby food the first of this week. His formula intake was down quite a bit on Friday and he is still retching and gagging during the sessions, so I am not sure what they are going to want to do. His total caloric intake will include both food and formula, but the formula ultimately has the most calories per oz, so I assume that is of the most importance right now. I would assume the first introduction to food will mostly be for the taste and texture rather than volume anyway, so we will just have to wait and see!
Hope you all had a great weekend, thanks for checking in on us!

Feeding updates...

They had the parent meeting with me yesterday to review Noah's current goals and progress as well as the results of his initial assessments. Here are some of the results (the very abbreviated version):
1. Poor strength and muscle tone in his cheeks, lips, and jaw.
2. Severe anxiety
3. Colitis and digestive issues
Current goals
1. Sit in chair for entire duration of feeding session (30min 5x a day)
2. Open his mouth for a spoon with water to formula on it.
3. Accept and swallow formula from a squeeze bottle
Long term goals
1. All of the above, but work up to 25% of his daily caloric intake by mouth to include both formula and pureed foods.

So far, Noah is sitting in his chair for 30min per session. He is accepting full strength formula from a spoon and swallowing formula that is squeezed into his mouth from a squeeze bottle. As of today, he swallowed an average of 2oz per session. Usually we bolus him 6 times a day at the rate of 60ml (2oz) per bolus for a daily total of 12oz. (He is still on continuous for 10 hours at night as well) Today he drank a total of 10oz for the entire day! He only needed the additional 2oz by bolus!!!! The only downfall that they are concerned about it that he is retching quite heavily during his sessions. We are sure that his tummy is empty between sessions and is used to having the same amount by tube at a faster rate than he is drinking it, so we aren't sure why. They are discouraged by this because soon they will introduce food, and he will need to be able to accept even more during his 30min session.
They were quick to point out that we do have a long road ahead of us. It will take time and continued therapy to get strength in his face and mouth as well as working up to varied textures of food and eventually drinking from a cup and eating table food. Not to mention the obvious intestinal issues that he has. The whole process is going to take much longer than our 8 weeks here in Evansville. BUT, the fact that he is drinking 10oz of full strength formula after just 2 weeks, makes me want to do back flips!! There is a light at the end of this very long tunnel! I was discouraged by yesterday's meeting, but I do understand that there is hope for these feeding issues, we will get there, and finally he is getting the help that he needs. We are actually seeing progress and that is something we haven't seen until now! He is sitting in his chair and letting people touch and hold him, and that is HUGE for Noah! We are exactly where we need to be and each day is an improvement, no matter how small or large it is!

Not your typical morning...

So, this morning, I am in the bathroom getting ready for the day. I hear Noah in the kitchen and yell at him to get out. I walk in to find him shutting the oven door. Naturally, he bolts out of the kitchen, knowing he was just busted being naughty. We both continue to go about our ways, when I began to see and smell smoke. I run back to the kitchen to see flames leaping from the top of the stove and in the oven. Apparently, seconds before I busted him, he managed to put a rather large plastic object (still unidentified) into the oven and turn it on. It wasn't long before the fire and smoke alarms were going off. We ran down to the front desk (They really love us here at the Studio Plus) and began to explain what happened. Luckily, the fire was extinguished, no one was hurt, and more importantly, they aren't going to kick us out. They have brought in some equipment to get the smoke smell out, otherwise we will be moving rooms again. So far, in our two week stay, I have manged to lock Elliot in the room, survive an ant infestation and now...fire. I do believe someone needs to come pick us up before one of us gets hurt! Please, please tell me that there is someone else out there that has had things like this happen to them too? Seriously, it would make me feel so much better!
Lots to report later on feeding news!

Not the best day, but it was bound to happen...

So no parent meeting today, not sure why, but maybe tomorrow..
Noah started the morning with the same routine as yesterday but moved up to 30min intervals in the chair. He did fine with this. He took another oz of very diluted formula in the first session over the course of the 30min. The next session they put a little bit more formula into the mix and he noticed it right away. He was wiping his mouth, making faces, and trying to spit some back out, but still managed to get almost an oz into him again. By the 3rd session, there was a slight mix up and he ended up with full strength formula in his squeeze bottle. This sent him into an all out retching and gagging fit and he cried for every drink the entire 30 min. They had to stop the clock a few times for him to compose himself and we weren't sure why the huge meltdown until they discovered the formula mistake. Dr Clawson said this is even more proof that we can't move to fast on him. Slow is better. So, we were back to the diluted mix the next time around. They have said that he has very poor muscle tone and strength in his mouth and jaw. This means he will have to work up to chewing and it may be a very long time before he is ready. We will be starting with pureed foods and work on texture grading for months afterwards. This explains the sudden refusal of food after a bite or two when he used to take some by mouth, he was simply mashing once or twice and swallowing whole. This is why the Beckman oral excercises are so important and we are doing these as often as possible. He has lost quite a bit of weight since the transition to the specialized formula. It is not as high in calories as the other so I predict we will be trying to move up in volume somewhere. I have already noticed a big improvement in his "bathroom" issues as well as changes in his skin since the beginning of the transition.
We are loving our new ant-free room! It has been a quiet, uneventful evening! From what I here, all is well at home with the boys. Elliot is still congested and snotty, but behaving himself for Daddy and Grandma. Zane had to have a cavity filled this morning but seems to have recovered nicely! Thanks to Pappy for escorting him! I am looking forward to all the boys coming down this weekend!

Ants in our pants.....

We had a great weekend at home, however, Elliot came down with quite a cold, so unfortunately that meant he had to stay home this week. My mom is keeping him while Brian is at work this week. We love you Mom!!! I can't thank you enough! It was heart wrenching to get in the car to drive back with Brian, Zane, and Elliot waving goodbye from the porch but then I try and remind myself why we are here and that it is going to be over with before we know it!
I can't believe we are starting week 2 already! Noah had another great day in therapy. He is up to 4 long sessions throughout the course of the day now. Today they introduced diluted formula in a squeeze bottle. I think there was about 2ml of formula to 5oz of water, but it still had some taste to it. Throughout the entire day, Noah drank a total of 4oz!!!! This is huge! Now, granted, it wasn't like he sat and chugged it down, it was small sips being introduced over and over again, but I honestly don't think he has ever drank that much!! They are hoping to start introducing yogurt the next few days. Tomorrow is the big weekly parent meeting where they will discuss his progress and goals. I am anticipating this one!

Tonight while I was getting Noah ready for bed, I noticed a few ants on the wall. I began to investigate further and discovered a thick trail of ants coming from the window, across the wall, over the desk and in my bed!!! I called the front desk and they so graciously offered to bring me a can of Raid. Um...I don't think that was going to cut it. Needless to say, Noah and I left our new friends behind and moved to a new room. This one is actually bigger so that was a bonus for us!
I will update with the results of tomorrow's meeting!