The beginning of the week was a little rocky. There has been an 18 month old at the house for months now. She has been there for numerous surgeries. She has also been sick a lot. She continuously plays in all the tupperware, pots, and pans. We think Ian might have caught a cold from her. We suspected illness because his retching started for what seemed like no reason. Often times, this indicates and cold coming down the pike. Funny thing was, each of his retching episodes *could* have been attributed to other things, historical reasons such as a bug meal, watching others eat, oral hypersensitivity, and so on.
On Monday and Tuesday, he seemed to be a little more icky. The retching remained the same. Toward the end of the afternoon on Tuesday, he vomited a small amount. Unsure of whether or not this was a “mucous retch” or a vomit, we decided to stress-dose him with hydrocortisone for 24 hours. I’m not sure if it was a quick ickiness, one he kicked before it set in, or the hydrocortisone dosing, but by Wednesday morning, he was fine again. This seemed to be the second time the stress-dosing worked for him. It used to be colds and viruses lasted two weeks or more. The last two seem to have disappeared within five days or so. By Wednesday, the retching had subsided again.
Ian’s tube meals have remained the same. Nothing was changed this week. He has’t had any daytime tube meals on three weeks now! The overnight meal is still 400mLs, which is just shy of 40% of his daily calorie needs. The other 60% are coming from purees and oral chewing foods and drinks. The overnight meals have been running smoothly. We have been using the AMT clamp to keep the tubing attached to the extension.
I also started using sponge medical tape to wrap the medicine port closed. We have used medicine port covers in the past, but I find the velcro never stays closed. A triple wrap of the tape stays on all night. We do give Ian medicine once overnight... but sponge tape comes on and off pretty easily. I can even use one piece for a few nights.
Ian continues to receive about six ounces of free water throughout the day to help with fluid levels. Since he is no longer on a fluid diet, his stools have become much firmer. It’s always about the poop with these feeding kids! Ian has responded well to the extra water and it seems to be helping.
Speaking of medications, Ian continues to stay on the Benadryl, but is keeping to three daily doses instead of four. His two PM dose was eliminated and his bedtime dose shifted to dinnertime. The idea is that he is slowly transitioning to Periactin (another H1 antihistamine). We are hoping the Periactin will help control the mucous and retching better for the morning episodes. Ian wasn’t responding as well to the Benadryl as he once was.
H1 Receptor Antihistamines
Diphenhydramine / Benadryl (Ethanolamines)
and Cyproheptadine / Periactin (Tricyclics)
****Cyproheptadine / Periactin helps retching****
Tom’s dad was here for the week to work on feeding Ian. He watches Ian one day a week. He had a chance to practice in the room with the therapists and even fed Ian a dinner meal one evening all by himself. Tom was here Monday and Tuesday when we thought Ian was catching a virus. He had a chance to watch more and will be here next week for his crash course in feeding Ian.
Ian also tried some new foods. He is practicing chewing toast, with and without butter. He even asked for some donut over the weekend. He ate half of a chocolate mini cake frosted donut twice over the weekend. His new favorite chewing food is Cheetos! Cheetos, cheese curls, Puffcorn, he loves them all. Ian also really enjoys yogurt. We put it in a blender with coconut milk to boost for calories. After it is mixed it is very smooth. He likes the strawberry kind the best.
|Enjoying some Cheetos|
Trying hard not to retch
Practicing some chewing
Ian ended the week consuming about 27 ounces of purees and drink a day!!
Ian is doing much better with his toothbrushing. The therapists have been helping him with the skill. Also, with all the oral desensitizing, and Ian learning it is safe, his oral response is so much better now. Hardly any gagging or retching on toothbrushing at all!!! AMAZING!
Ian began counting to TEN by himself this week. Very cute!!
Counting to TEN
Ian had a lot of fun outside this past week. He keeps saying “more outside” over and over again. He didn’t get a chance to play much the middle of the week because the snow came through. Richmond was calling for snow, but never gets snow.... so everyone panicked! But then, they called it off, and everyone still panicked! Turns out, on Wednesday, snow did come. Richmond-ers called it being *dumped on.* Truly, it was about four inches of snow which melted halfway by the end of the day. When you don’t typically get snow, and no one is used to it, or used to driving in it, panic sets in.
The clinic did remain open all day. One family went home early, the other didn’t make it in, and the two Ronald McDOnald House families were there all day. We are less than three miles away from the clinic and it is easy to bunker down, should there be a weather emergency....... four inches certainly was not, to us. There was a beautiful view out the clinic window that morning.
|View from the clinic window during the snowy day|
|Making music with daddy|
|The elementary school garden at the playground|
|Recreational Therapy Creation|
|Ian has decided Ronald's shoes just aren't right for him :)|
WHEN WE RETURN HOME
Once Ian leaves the day-patient program, he will begin out-patient therapy. Tom and I have decided to keep Ian here ins Richmond for therapy. He will most likely be coming once a week, maybe twice a month. We are waiting to hear about a day and time, but are going to try and do everything we can to make it work. He is responding very well the the protocol here and it seems to suit him nicely.
We have been talking with Ian’s preschool as well. They are the most amazing people!! They are openly willing to help make scheduling and procedure accommodations. We couldn’t even get some schools to admit him! We will be working on some protocol with them after we return. We will also have a chance to review schedules and make plans for the fall.
Most moms say they are ready to come home when the program comes to an end. Maybe I’ll feel that way in two weeks when the time comes. Right now, I want him to stay and make all the progress he can!! I do miss home, but I know this is where he needs to be right now. Hopefully, after discharge, outpatient therapy and homework will keep him moving in a positive direction.
**Ian continues to make great progress. We great some good news everyday. We also have something to always be working on. Ian seems to be enjoying the experience much more than I expected. He almost always has an open mouth for his bites and his drinks. He is certainly our *star student.* Thank you for all of the love and support. It makes us smile, everyday!