The week started off well. A little girl from World Pediatric Foundation is in the house as well. She is a bit younger than Ian. It was quite the unrequited love affair. Ian chases her all over, smiles and giggles, and loves playing with her. She however, runs away. After a while, little smiles followed. Now, they both play a little “hard-to-get.” It’s adorable! They like to sit at the bottom of the stairs together and shoot coy glances at one another.
The Director of Development was able to get a video spliced together from last week’s dance footage. The video is to promote the Red Shoe Rendezvous fundraiser in the fall. The video is great. Ian did *not* like the shoes, but was given a great line in the song about the shoes being “not right for him” while he stands in them and cries. Oddly enough, it’s pretty adorable too!
red shoe rendezvous
It was another full week of family learning. My sister had a two day crash course in feeding Ian. She was great! Her speed and volume were excellent. With a little guidance, her spoon placement and small technicalities were ironed out by the time she left. My mother also wrapped up her training here. She has been helping out each week for a few days at a time. She has had lots of opportunities to watch and practice. All together, the three caregivers (mom, Tom’s dad, and Amy) had a handful or two of practice meals both with instructors present, and alone at the house.
I didn’t have as much chance to practice with instructors, but had been doing it quite a bit before the last couple weeks. Tom will be here this next week to have his turn. It isn’t a horribly difficult task, but takes learning a new skill. Ian is fairly tolerant of the feeding process and like I said, is maybe even beginning to *enjoy* it!
Once we are home, we will be working on a preschool feeding schedule. The preschool has been amazing. They have done so much for us already and are eager about learning what they need to help Ian. Our family is truly grateful for their support and love. Ian will eat before school, but will also need to eat, somehow, before coming home. Chances of him falling asleep on the way home are good and pushing meals too late in the day backs up all the other meals. It is quite a routine getting all those meals scheduled.
Speaking of scheduling meals..... working them all into a day is exhausting! Ian has four meals. By the time I prep whatever he is eating, gather up the things downstairs and set-up, do his oral-motor exercises, practice chewing, feed him his meal, and clean-up.... an hour or so has passed by. With four meals in a day, that leaves a little over an hour before we need to start all over again. That pretty much schedules the whole on *FOOD.*
We have discovered that the best open windows of opportunity are between meals one and two and also between meals three and four. The window between meals two and three is nap time. We aim for meals to be around 9A, 11:30A/12P, 3:30/4P and 6/6:30P. It is a lot easier to space out meals at home than at the clinic.
The clinic needs to get three meals in by 2:30P. With Ian’s schedule, everything gets rearranged. After Ian eats at 9A in the clinic, he has a break until 11:30A. That isn’t usually a problem. However, after meal 2, Ian naps. We have to wake him for the third meal. He usually only gets to nap about an hour and a half..... making for a very unhappy Beaner for his 2 o’clock meal.
It is harder being away from home. Once we get home, we can blend foods and freeze them in batches for future use. Freezing home made foods in ice cube trays makes for one ounce portions, an easy measure. Moving supplies around will also be eliminated at home. We can leave things where we need them regularly.
Quantity of meals was a question at one point. Right now, Ian is eating four meals a day, all of equal opportunity volume. Some children eat three meals and two small snacks, of smaller volume. This was/is an option for Ian also. With it being so time consuming to prepare, carry out, and clean up his meals, I cannot imagine getting him into the chair five times a day!
**Table Foods, Spoons, Volumes, Tube Weaning, Medications
Ian is working hard on his table foods. He has been doing well with buttered toast, pancake, and waffle. Also, he ate half of a NutraGrain bar this past week! Right now, the clinic does not count the table foods in his caloric content. They mentioned if he kept eating that much table food, they would need to start counting.
Ian has been trying more entrees at the clinic. They often use SmartOnes and Lean Cuisines because they do not have a full sized kitchen. He has had Lasagna Florentine, Chicken Pot Pie, Turkey and Mashed Potatoes, Chicken and Rice, Chicken and Stuffing to name a few. He has also had pancakes and waffle, and even french toast. All of these have been pureed. Ian has a harder time with the entrees because of textures. He is still only getting smooth purees, but some foods are harder to puree than others. We have learned thinning, thickening, and calorie boosting techniques to help find good consistencies for Ian.
Ian tried new foods at home too. He had Fruit Loops, a bite of donut, Corn Pops, Puffins Cereal, and Cheetos at home this week. He did a great job on all of them!
|Munching on Fruit Loops|
|Tasting a glazed donut...... yummy!!|
Ian has had a progression of spoons since starting the program. He began with The First Years Spoon, then progressed to the Munchkin Disposable Spoons.
|Munchkin Disposable Spoons|
Today, he had both his largest meal by volume and his largest day by volume. He had a meal today that was 10 ounces. His overall total was over 33 ounces. That is a very large amount of food. Since his meals have been growing during the day, his overnight meal has been shrinking. Before the program, Ian’s overnight meal was 600+ mLs. Right now, it has been decreased to 400 mLs because he has been taking around 600 calories by mouth.
Now that Ian is taking more by mouth, they will most likely decrease it again this coming week..... hopefully. As they wean back on his overnight meal, not only does it remove calories that he needs to make sure he consumes orally...... but we need to make sure he can keep his glucose at safe levels. With ketotic hypoglycemia, the body has an abbreviated fasting period. As of last April 2012, Ian could safely fast for 8 hours at home, but asked us not to do more than 6. Medically, he can go for 12 in a hospital setting. Those numbers aren’t horrible, but they are much lower than they should be.
|Enjoying some Fettucini Florentine with Broccoli|
As Ian’s overnight meal weans back, the decision is whether or not to decrease the time as well. Ian’s baseline meal overnight was 600 mLs, over 8 hours. Now, he gets 400 mLs, over 6.5 hours. As the volume and timing go down.... we have to look at *where* to place it during the night safely. If he finishes dinner at 7P and eats breakfast at 8A, that is 13 hours of no food, except the small overnight meal. Strategic placing is important. It is also important to his mucous production and morning-waking-food tolerance.
The medications are also being rearranged. Since meals are changing times, so are the meds. Some are trying to be weaned back, some removed, and some simply rearranged.
|Ian’s Children’s Benadryl dose: 5mLs three times a day|
|Ian’s Prevacid Solutabs dose: 1/2 of a 15mg tablet twice a day|
|Ian’s (Eryped) erythromycin dose: 0.4mLs three times a day|
|Ian’s Periactin (cyproheptadine) dose: 3.5mLs twice a day|
While I was getting ready for the day on Monday, Ian started grunting like he was pooping. When I asked him if he had to poop, he told me yes. I immediately put him on the potty. I had to hold him from falling in through the seat, but he did poop in the potty! His stool has been under close e of the dietitian for fluid requirements........ and that is all I will say about poopies!
Ian had a blast riding all over the hospital center in the little purple car. It’s a little “Flintstone” car and his little legs move a mile a minute! Somehow, he never seems to get tired. He has friends all over the hospital!
He also had a fun visit from Nonna and Uncle Jimmy. Grandpa was golfing in Myrtle Beach and Florida....... lucky Grandpa!! He had tubbie time and read some books at bedtime. He had fun playing at the playground today too.
|Cruising the halls|
|Reading with Nonna|
Like I said, Ian had another great week!!! Tom and I are more around of him everyday. He is doing amazingly well and we are having a hard time believing it is even happening. After over two years of pretty much moderate-to-poor trials, the feeding and retching seem to be on their way out. Ian’s retching episodes are only 1-2 times a week, maybe, and he seems much healthier. Real food has done him good!!!!!
Thank you again to everyone for the support.... we remember it every day. We believe it is that strength that has brought the courage to keep trying, and we will continue to do so.... Thank you from deep within our hearts.