Gideon is over 2 years old now but still not speaking. He babbles sometimes and will cry when upset but has not really been able to communicate with us using words. His smiles tell me he's happy, his squeezes, that he loves me. When he pushes something away, I know he's really not in the mood. Occasionally he will reach for something just out of reach that interests him and "complain" for help.
I expected some language delays because of his mild hearing loss, but there should be more emerging than what is accounted for.
Our speech pathologist suggested using sign language.
Surprisingly he has been picking up some words. It's mostly when we say the word that he will sign it... he's not really instigating them. So far ball, more and milk are the most consistent.
These are the words we are working on:
Signing with Gideon is tricky. Because of his visual impairment, I'm sure that when I model, he just sees my blurry hands moving. Trying to figure our what the fingers are doing must be hard. I try to do hand over hand with him. Sometimes he lets me. His signs are a little different from standard ASL right now, but I know what he's trying to sign.
He laughed when I first brushed my hand across his face and he then tried it. He seemed to pick up on that one really quickly.
The other morning I was feeding Gideon his bottle while Alex was trying to eat his breakfast. Gideon was signing milk (Click for Demo) while he was drinking. I then told Alex, who was trying to escape the breakfast table, that he needed to drink more milk before he could play. Gideon then signed "more milk".
It made me smile. I told Alex that even his brother thought he had to drink more milk :)
I'd love to know what signs other parents find most helpful with there kids. I feel a little lost in this new language I'm learning. I really hope Gideon can catch on and start to express himself. Fingers crossed!
It's been hard for me to write lately, for a number of reasons- some being mere practicalities, pure business. The harder thing to admit is the mixed emotional state similar to paralysis that being overwhelmed can lead to. These past two months have had such a contrast of highs and lows.
We moved to a new house in July. We are now living much closer to a hospital with a pediatric team and John is much closer to work. This has meant less commuting time for him and I even get to see him in the middle of the day when he comes home for lunch. The house we moved into is a bungalow on a very quiet street- perfect for Gideon. The only issue was that there was carpet all throughout the main floor. With Gideon's throwing up issues (vomit on carpet = ewwwww gross) and his mobility issues (walkers and carpet don't mix all that well), we decided to rip out the carpet and put down hardwood.... ourselves. And since we were redoing the floors, we thought we might as well take out the walls around the kitchen. We hired a contractor for that part. Unfortunately the contractor found aluminum wiring in our house. This resulted in some extensive electrical work and sealed the "do it ourselves" flooring to stay on budget.
Then a very sad thing happened.
Our dog Sprocket bit one of the contractors when he came downstairs while I was with the boys. She bit him on his heal and drew blood. I'm sure she was just being protective and that she was unsettled from all the banging and noise from upstairs. She was also still a little off because of the move to the new house. My nerves were a wreck. The contractors were very kind about it all. Because Gideon has so many different workers coming and going from the house, we made the very hard decision to give her up. We couldn't risk something like this happening again. She was adopted very quickly but that didn't make my heart feel any less broken. I had Sprocket for over 9 years. She was a wonderful companion and I still feel sad and miss her.
Gideon has been doing fairly well. So far the G-tube has been helping to keep him hydrated during his more intense vomiting stretches and we have avoided hospitalizations in both July and August. His fight with solids has still been a challenge. After his June admission, he refused to eat anything solid and would push the spoon away. The past two weeks have seen some progress. He has opened his moth for me a couple of times and he has been holding onto his spoon instead of just throwing it away. Gideon is also able to sit unassisted now.
Alexander, on the other hand, has not had such an easy go.
About three weeks ago, after dinner, Alexander suddenly vomited and went unresponsive. His eyes were open, he had a shallow breath and he was limp. I was sure he had a seizure. We called 911 and an ambulance came. My mom rushed over to take care of Gideon, while I went in the ambulance with Alex and John followed in the car. I kept calling Alexander's name. I tried to pull him out of it. There was nothing for me to do. I was holding it fairly together, until the ambulance attendant checked his pupils- and they did not respond. No movement. No dilation. There was nothing. That's when the panic really hit me.
The ambulance rushed through the city, lights and sirens No fever. Sugar levels were normal. What was going on? It felt like the blood was draining from my head and sitting in my stomach. We arrived at the hospital and he was still unresponsive. For 20 minutes he had been in this state.
And then, out of the air, he cried.
No words. No proper responses. It didn't feel like we were in the clear. Every so often he would drift. Like he was lost- gone to some other place inside his head. I'd call his name a couple of times and he would start to scream again. This lasted for a good 45 minutes. Then came the gibberish and single words repeated. Like a broken record, repeated rhythmically, mechanically.
Slowly the words were less rhythmic and more natural. Not as fluent as he normally is, but the words came and I felt more at ease. Still we had no answers. No reason. No cause. The lab work was normal. The xray was normal. The doctor had no explanation so he sent us home.
That night, Alexander vomited. It was so late and we were so tired. We cleaned things up and he slept in the bed with me while John slept on the couch. The next night, he vomited again while he was sleeping. A week later, he vomited again so I brought him in to the ER at 3 in the morning. I was anxious. Is the vomiting caused by the seizure? Why is he fine during the day? Why is he not complaining of feeling sick? No fever. Nothing in the lab work. "This is not something we will solve at 3:30am in the ER" as the doctor told me. After the forth vomit during his sleep, I made an appointment with the family doctor to get an EEG expedited. He had a sleep deprived EEG on Monday. Tuesday, he woke up in the night vomiting again.
Can a virus last 3 weeks? We haven't gotten any results yet from the EEG and I'm praying this is all just a virus gone wrong.
Anyway... we are all going to go to a Teddy bear picnic today and it's time to pack up the basket and blanket. Keep pressing on. Just keep swimming. Break through the paralysis.
Try and bring some normality to these small little ones.
This weekend I fed Gideon at a small house warming party consisting of mostly strangers in their mid twenties to early forties. This was the first time I used his G tube outside of our home.
We were in a fairly confined outdoor space, a small patio, so it wasn't exactly discrete. I also didn't feel like I should isolate Gideon. Everyone else was snacking and drinking so why should we go inside to eat? For some reason, internally it felt like the old breast feeding debate reinvented. Should I be concerned about making other people uncomfortable? How would I feel if people stared?
I decided that all of it didn't matter. I casually lifted his shirt, while distracting him with a book, and hooked him up to his extension tube. I sucked up his formula in a syringe and went at it. I had tried feeding Gideon orally, as much as I could, but it was hot and we were in a strange setting, so he was just not really into it. I had to push more than I normally do into him via the tube. It seemed to take forever.
Yes, some people looked uncomfortable, while others looked with wide eyes before turning to conversation with others. Some had a sad look of pity in their eyes, others started up a conversation with inquiries into our situation. Yes it came across a little awkward as I tried to talk to others, casually inserting comments into their conversations every so often, as I held a syringe and tubing in my hands. I didn't care. I was owning it. I was overcoming social taboos and claiming public G-tubing as normal.
I've never seen anyone g-tubing in public. I'm sure parents do this all the time. They really are more common than you might think; our surgeon said they do 2-3 G-tube surgeries every week.
I'm not sure what advice to give to others who come across someone G-tube feeding in public. I think all the reactions we received were quite normal. What I wouldn't do is intentionally make anyone feel out of place. I don't mind answering questions about the G-tube or our situation with Gideon. I don't mind ignoring the elephant in the room, in an attempt to normalize it. What would make me angry is if someone assumed things about Gideon because of his G-tube and vocalized these assumptions or if someone verbally spoke up about loosing their appetite, while guzzling wine and asking us to be more discrete. I'm so glad there was no one like that at our first G-tube outing.
I think the next time I see someone else G-tubing in public, I'll smile to myself- as a nod to mutual understanding and in support of societal norms.
It looks so foreign, not in a cool way like a piercing or a tattoo but more like a workplace shrapnel accident. I'm sure with time I'll come to embrace it but right now it's just hard to swallow. I wonder if I'd feel different about it if he had it right away. If Gideon couldn't eat at all right from the get go, I'd probably have nothing but praise for the direct access to his stomach. The G-tube seems to mock me or challenge me. It's trying to one up me. I look at it and feel pressured to feed him, to get as many calories into him as possible. I offer Gideon a bottle and I try to coax him with songs and games, anything to get him to bite onto that nipple. Right now the feeding plan involves me feeding him orally on a very set schedule. Whatever he doesn't eat, I offer to him orally about an hour later and whatever he doesn't eat then, I put into the G-tube, followed by a "flush" of water. The trick about it is that you don't want his stomach to be too full or he might throw up. It gets even more challenging when I try and feed him solids. These have less calories than the formula, sit heavier on the stomach and for some reason have not really been taken into account in "The Feeding Plan" given to us by the dietitian.
I feel like I have a newborn again.
So far we have only used the syringe to feed him through the tube. There is also the option of using a pump. With this option you hang a feeding bag on an IV pole and thread the tube through the pump, like threading a sewing machine. You hook up the tubing to his G-tube and the pump will slowly feed him over whatever time frame you program the pump for. This option might be helpful if Gideon is feeling nauseous. Being able to feed him a large amount slowly over a longer period of time is much easier on the stomach than a quick large bolus. Some parents even do this while their child is sleeping.
We had a weigh-in yesterday and Gideon is over 18 pounds. Obviously his growth is not as dramatic as we would like, but I know the G-tube will help us work toward our goals.
Yesterday after we were discharged, we drove to my sister's house to pick up Alexander's health card and to break up the drive home. There were birthday veggie burgers, streamers, a dancing golden retriever, lot's of presents and of course cake and candles. Alexander had a very nice birthday celebration, despite the chaos of discharge and long car rides. The Ronald McDonald House even let him pick out a toy, before we left, from "the room that pirates leave toys in", in honour of his birthday. This year's gifts seemed to centered around Star Wars, Lego and Dinosaurs. We didn't get back home until after 7pm. About 10 minutes after we got home, we received a call from the community nurse asking if she could come over for a consult. It was close to 9pm before she left. John and I both wanted to crash but Alex was having a hard time settling after all the excitement of the day. It was closer to 9:30 before he was still. Gideon woke up maybe twice last night and I'm sure my snoring kept John up most of the night. This morning we had Physio and OT over and now the community nurse is on her way over. I think I'm on my third cup of joe.
I just want to catch my breath- that or shower. Hmmmm... breath or bathe?