Day 885 - Aunt Liz Visits, No Glasses 👀, & New GI Doc 👩⚕️
Sunday, May 28th, 2023 - Saturday, June 3rd, 2023
This is one of the busiest weeks James has ever had!
On Sunday we went to Busch gardens!🦒 On our way there we stopped at Walmart to buy a tiny crappy collapsible stroller. See when we use our nice expensive baby jogger stroller Mom does not feel comfortable leaving the stroller to ride the train. Dad really wanted to ride the train. 🚂 Come to find out that you can even take your collapsible stroller with you on the train if it's small enough. Busch gardens is huge and when we finally made it to the first train stop to get on we realized that we had left the diaper bag along with the emergency bag and his replacement G-tube at security when they checked all of our bags. So Dad got in his steps and jogged back all the way to the entrance. Mom took James to the bird exhibit while we waited. James was really impressed with the flamingos! 🦩 After the train ride that went around to the other side of the park we saw two shows. 🎪 One was a type of Cirque du Soleil (well that's a stretch 😂) and the other was an amazing ice skating show! ⛸️ Literally just riding the train and seeing two shows was the whole day for us, but we got to make use of those annual passes! 😆
Monday was memorial Day and Aunt Liz came into town to meet James! She spoiled James with gifts. His favorites being his Hot Wheels 🏎️ and a ball pit for his balls. 🟠🟡🟢🔵🔴 Videos below are adorable! We had an early dinner at a restaurant outside in St. Pete. James did so good. He chilled on the couch with us, watched dogs walk by, and took a nap.
👁️👁️ On Tuesday James had his first vision therapy appointment. James immediately pointed to the chair and let Mom know that he would rather sit in a big boy chair in the lobby then the stroller. 😂 We were seeing our first pediatric optometrist (treats eyes) versus previously seeing a pediatric ophthalmologist (performs surgery). Basically this appointment they checked his eyes to see if Vision Therapy is something that would be necessary and also if he needed glasses. Good news! James currently does not need glasses but possibly could need them in the future. He has a +2 vision which honestly was very confusing to Mom and we couldn't really get a clear answer. The doctor also thought that he really didn't need vision therapy and that he is young enough for this for strabismus extropia to fix on its own. He told us to continue to NOT patch. James' eyes did look really good. They have gotten better over the months, we had just been waiting for months for this appointment. Overall the appointment went well except for James screaming incessantly. It is really hard to talk to a doctor while your toddler is screaming. He was tired and needed to take a nap but of course our appointment was during his nap time. 😫
🥼👩⚕️ Wednesday was our long-awaited GI appointment! It had been 7 months since we had seen a GI doctor. Our appointment was amazing. The doctor and the dietitian talk to Mom about a plan to get James back to a G-tube button. The plan consisted of getting James on a new medication called cyproheptadine which would make his stomach larger able to accept more volume. The only side effects of this medication is that it would make him sleepy and also make him hungry. In addition we would possibly be adding back erythromycin later on if needed. We also discussed changing his formula to a thicker higher calorie formula. The reason being the thicker formula would pass through faster and prevent reflux. The doctor also thought the James didn't have reflux and would like to wean the prevacid that he is currently on. They spent a long time with Mom in the office writing everything out. The plan would be to have James start the cyproheptadine for a few days and then start to feed James into his G-tube. We also needed to start clamping his G-tube and get rid of the Farrell bag that was venting his stomach 24/7. they did say we could use it to feed him and do his stomach (G), once we stopped feeding him into his intestine (J). Lastly we discussed switching DMEs in case they could not provide the new formula as well as switching pediatricians so that everyone was at USF. They said that the USF complex clinic would handle the transfer of all of our medical equipment for us. It would be easier to have all of our doctors working together and access to them on the same portal.
We immediately started clamping his G-tube that night and removed the Farrell bag. Sometimes the Farrell bag creates more problems than it helps. When it is hung lower it drains the stomach and then when it is hung at the correct height it pours back into the stomach like a bolus feed causing leakage. Whether it be sitting in the carseat in the car or in the stroller sometimes the Farrell bag cannot be hung at the appropriate height causing problem later. But it was great seeing that James didn't need the Farrell bag, he was doing fine without it while getting fed into is J!
🚚 On Thursday, our DME was scheduled to pick up James' ventilators, humidification chamber, ventilator stand, and several battery packs. Video below of James saying goodbye. This would be a lot of huge equipment getting out of the house! In order to get this set up Mom needed to contact the pulmonology office and request that they send an order to DC this specific equipment. Mom also let the DME know that our feeding pump had been making weird noises and we needed it replaced before it died. They said that they would have the driver who would be picking up our equipment would also switch out the feeding pump. It wasn't until later Thursday night that we realized this "new" feeding pump was much worse than the one we had! They probably gave us the oldest one that they ever had. The door wouldn't stay shut. What does that mean? Feeding pump consistently beeped and would stop working. So we needed to duct tape the door shut. What a piece of crap! So Mom immediately contacted the DME and let them know that we would like to get the other one back if this is all they have and they agreed to ship out another the next day.
🧍🏻♂️James has been doing really well in physical therapy. Our main focus has been having James pull himself up by himself. Using his hands first and then moving his leg into a kneeling position and then eventually standing. Most toddlers figure this out on their own but in our case we are teaching James every little step of how to do this. In the GIFs below, you can see James pulling himself up all on his own! And yes sometimes we need to use the tablet as a incentive. A concern is that he does bend his left knee and hyperextends his right leg when he stands. It's something that we need to keep an eye on so that he doesn't have a muscle imbalance. We noticed that this comes from when he scoots on the floor he only really uses his right leg and right arm to move. So in order to fix this when he stands we have been placing a book under his right foot. This makes him straighten out his left leg and bend his right knee. We need to get his left leg stronger.
😴 James started taking an additional morning nap because of the new medication it was also making him grumpy (which is a real side effect according to the other medical moms). He has been asking for food by literally scooting over to the fridge and signing for "eat food". It was almost like his first sentence. So Mom asked him if he wanted yogurt and he screamed and then scooted over to the kitchen table pointing to the high chair. Mom asked if he wanted to sit in the high chair or the big boy chair and of course he would rather sit in the big chair. 🥄We have been feeding him Brown Cow yogurt because it is super high calorie and high fat. One little container is 170 calories which is like 4 hours worth of feed for James. Originally we thought that we needed to plump James up because he was losing weight but the GI doctor confirmed that his BMI is great. He weighed 22 lb and was 31in at has appointment, so for his height his weight is fine. Mom was concerned because James weighs the same amount as his friend that is a year younger. The doctor told Mom to stop comparing to other kids. She also reminded us that it is harder for a chunky toddler to learn how to stand and walk. It'll be easier for him if he's not carrying a bunch of additional weight.
🤰🏻 Mom did not have any appointments this week but we did buy a Big Brother t-shirt off of Etsy that James will be sportin this upcoming week for some pregnancy announcement photos! We weren't quite sure when we wanted to announce it on Facebook officially but after Mom spoke with her therapist she decided that it would be really nice to have everyone's support now. On the drive home a double rainbow appeared in the sky just to give Mom some reassurance. 🌈
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| Just one of the two ventilators. |
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| Mom thought they might want this back, they didn't ask for it. |
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