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?
Alexander and John came yesterday afternoon. It was so nice to be reunited as a family. But then at supper time, Alexander began to throw up. Really? John told me he threw up during the night too. Now they have to stay away from the room so Gideon doesn't catch it. I'm a little worried he may have already caught it. Last night Gideon threw up and he was really fussy and seemed both nauseous and in pain this morning. He was refusing the bottle and was even pushing me away when I tried to hold him/comfort him. He's doing better now with some anti-nausea medication and more Tylenol. I just hope it's not going to turn into something more. Part of the pain problem might be due to a hematoma (a swollen blood clot) that has developed by the insertion they made in his bellybutton. It's also really bruised looking. Poor little toad. They are hoping to take out the buttons holding his stomach in place tomorrow. These might be causing some pinching too and hopefully he will be in less pain when they are gone.
The good news is that Gideon passed his Milk test and they didn't see any significant signs of aspiration. This means we can continue to feed Gideon orally and just top him up through the G-tube!!! I am really happy about this because it would have been really hard on both of us if he had to stop eating orally. It's such a comforting thing and a means of connecting with him. Also, I'd hate to see all the hard work he's been doing to better his oral motor skills and the progress he's made in the fight against oral sensitivity issues with textures/tastes go all to waste.
Here's to better days on the horizon and hopefully Alex will feel better for his birthday tomorrow. Not exactly sure where the celebrations will be held if he's still sick. Maybe we should just push it off a day or two. Do you think he'll notice?
We had a really good night. Gideon is not in as much pain, he is no longer taking morphine and they just took out his IV. (Oh what a stinky stinky hand) He is alert and settled. He's only thrown up three times- twice while trying to give him oral Tylenol through a syringe which he has always protested over and once after the first oral feed which he drank so quickly, it's no wonder he threw up. I think the plan is to keep him in for a few more days so they can make sure the feeds are going well, to remove the buttons pinning his stomach in place, do a special test to see if and how much he might be aspirating and to make sure he his bowels are working. Poor little toad has not pooped since Sunday.
Thank you to all my friends and family for all the love and support; the phone calls, emails, flowers, thoughts and prayers were really really needed and very appreciated. My spirits were low but now I feel lifted. I am far more at peace about everything and Gideon seems to be doing so much better. God is Good and a Multitude of Prayers does Miracles!
I feel like a bundle of nerves; exhausted, on edge and chilled. I wish I had more sweaters with me. The xray study went well and everything is in place. (Thank you Jesus) Gideon has been sleeping off the excitement and I've been trying to distract myself with a mediocre detective novel. I keep envisioning the G tube popping out and imagine how that must feel. I can't help but feel a little nauseous.
We have been given the OK to use the G tube again and that we can even try to do a little oral feeding too. It seems that this set back was only temporary. I just hope it doesn't have an impact on the pain management side of things. The nurse brought in a big elastic pressure band to slip around his abdomen. I guess this is to prevent more tubes from popping out. I look at it and wonder if they trust me to move him around. I know this is just the guilt talking, still I can't help but feel a ping of deflation. Like I'm failing in this.
I cradled Gideon this morning, with his head on my shoulder and his knees tucked high. He fell asleep. When I placed him back down in the crib, I heard a "pop" and Gideon was no longer so content. Nervously I lifted up his gown. I swore. Four letter words came flooding out my mouth as my heart began to race and my feet turned to pacing. I rang the nurse bell, opened the door and my small voice said "Hello? I need some help. I think his tube came out!" Tears, panic, whispered swearing, consoling as the nurse went to find a catheter to place in the hole. We had to wait for someone from surgery to come. A smooth insertion and a quick tape. Gideon was not too hard to console.
The nurses left and things were a little calmer. I turned to distracting him. He seemed uncomfortable and was moving around. I checked his belly and the temporary tube had come out and there was more scrambling for nurses and supplies to find a tube that fits. Where is the guy from surgery? Now his tummy is leaking. It's hard to secure the new temporary tube in place. Did you just wipe those secretions with his gown? Thoughts of antibiotics swirl in my head. Please Lord, no infections. He's fighting so hard. He hates being held down. He screams and I try my best to console. The new temporary tube is in and layers of tape make a mess of the site and we wait.
I feel shaky.
I sit in a chair and they place Gideon on my lap and I try to make everything better, though my songs and comfort only go so far. The doctor arrives. He asks what has happened as I place Gideon gently back in the crib. He inspects the mess left by the nurses. His student holds down Gideon's legs that try there best to flail and I sing "Black Bird" by The Beatles while holding his arms. Sticky, wet tape is removed to reveal the tube inserted into the stoma. The doctor sucks back some stomach juices with a syringe to make sure the tube is placed were it should be before removing it. Yellowy, brown secretions/juices bubble and ooze out the hole that leads to his stomach. I think my eyes grow a little wide. At least this time, the doctor asks for some gauze and he gently sponges his tummy. He uses a syringe to deflate the small ball of fluid on the Mic Key G-tube that came out and then lubricates it before sliding it into the stoma. He re-inflates the Mic Key (with more fluid than before to hopefully help it to stay in) and tries the syringe again to see if he can suck out any stomach juices to confirm the placement. No dice. By now my singing is having no effect on Gideon's demeanor and it feels like a slight failure on both our parts. The doctor informs me that even though he couldn't confirm placement, he thinks that the stomach should still be attached, as the two buttons holding it in place seem fine, and that there is no play/wiggle room happening with the Mic Key so everything seems to be in place. He will arrange for a study done under xray to confirm before we use it again.
Worn out, it doesn't take long for Gideon to crash. He's still sleeping now.
I, on the other hand, am buzzing with adrenaline and coffee, nervously awaiting the porter to bring us to xray.
Gideon was really hard to settle when he woke because of his pain and he seemed more uncomfortable when I picked him up than when lying down. The only thing I could do to calm him was to bend down close and brush my hair across his fingers until he grabbed hold of it himself. I'd chime in with the phrase "You found Mommy's hair" and for a moment he would calm. I sang to him while he held my hair and he would drift back to sleep. Sometimes it worked. Sometimes I had to call the nurse. The doctor came in this morning and suggested an increase in his pain medications.
This morning he woke up uncomfortable and sad. Right now he has settled - Thank you Jesus.
Gideon awoke with a scream. I tried to console him. His monitor screamed in response. Where is that nurse bell? Morphine? Is that morphine you gave him? Topped off with Advil? Tears flow as my voice breaks and I can't even sing to him. I hush and shush and rub his back and tell him everything will be ok. I'm not sure if I'm consoling him or myself. It hurts to be so useless. It hurts to see him in so much pain. I set him back down and find my voice again. As I brush my fingers through his hair and sing softly, he calms to a quiet moan and drifts. Sweet little one, I would take it all away if I could- God I wish I could.
The surgery went well. Gideon and I are now back in the room and he's sleeping comfortably.
Maybe it was the stress of waiting room, but when I saw him in the post op room, the reality of it all really hit me. Two small white boxes sat on the crib with him labeled brightly, containing what I assumed were additional parts I would need to feed him with. Gideon looked tired and small. I felt nervous to pick him up, like his insides would fall out the moment he was cradled. The nurse showed me his new addition and I couldn't help but cry a little. My nose dripped as I tried to hide my emotions. I dabbed it on my shirt cuff. As I held Gideon in my arms I thought- What the hell have I just done? Did we need to do this? Couldn't I have just tried a little harder? I was flooded with regret, remorse over allowing this invasive procedure. How could I let someone put this dis-morphing, disfiguring, "thing" in my son? What have I gotten us into?
I sang to him. My voice soothed him as he drifted in and out of the anesthetic and his stats seemed to even out, with only the occasional alarm to advert my eyes to the monitor. I kissed his head and cradled him close and cried only on the inside as the nurse called the transporter to bring us back to our room. The anesthetist warned us that fluid could accumulate in his lungs. The anesthetic is harder on him than before because of his history of repeated pneumonias. I will have to be diligent with the chest physio.
After a short chat with the dietitian and little food on the stomach, I feel more level headed. The nurse just gave him some medication via the G tube, so I guess it's been christened. I think it will take some time to adjust to this new chapter -A learning curve of some sorts. I already miss that smooth little belly that I would kiss and tickle; the raspberries that would make him laugh will have to now be a little askew. The rational me is confident that we have chosen the right path. The emotional me still feels a lump in her throat.
I brought Gideon in to see the paediatrician after he threw up last Friday and they admitted him at our local hospital. He continued to throw up and they couldn't get an IV into him. They ended up putting a tube down his nose into his stomach to feed him. This was horrible to watch and pure torture for Gideon. This tube came out twice while we were there; once I think he pulled it out and it came out from his nose. The second time it came out when he threw up and the end of the tube was coming out his mouth while going in through his nose... like that horrible noodle trick people do. On Thursday we were transferred to the London hospital. The plan is to have a G tube put in on Monday. His current diagnosis is failure to thrive. Even if the G tube doesn't stop the throwing up, it might help keep him better hydrated when he gets like this and it also could help with some catch up weight.
On the up side he didn't throw up yesterday and his oral feeds are getting larger. He's doing really well in my eyes.
Thanks for all the love and support.
Gideon has thrown up twice three times today. His a happy little toad with no fever, cough or runny nose. He looks perfectly fine. He's active, he's playing and he's smiling. What am I suppose to do? In a couple of days, I bet there will be coughing or a fever. He's going to get dehydrated. How much do you want to bet he will have pneumonia before the end of the month?
Yesterday we saw our geneticist. When we got the call for the appointment, the secretary had informed us that she was moving to the East Coast next month. I assumed that our appointment was just a routine consult to follow-up with Gideon prior to him being transferred to a new geneticist.
Our genetic testing results came back.
I equate it to a long snare drum roll, thick velvet curtains being slowly pulled back to reveal a tall man dressed in a slick tux. He then pulls out a whoopee cushion and sits on it.
The Whole Exome Sequence analysis came back practically normal. There was no gene variants found to account for his phenotype (a fancy word for his unique genetic characteristics). What they did find was a "Variant of Uncertain Significance" on his PTBP1 gene. Technically speaking: It is the gene that encodes the polypyrimidine tract-binding protein 1.
What does this mean for us? Pretty much nothing. They have never found this variant before in humans and "To date, no pathogenic variants in the PTBP1 gene have been reported in association with a specific human disease to our knowledge". One of the issues is that the function of this gene has not been "completely defined". - What we know about it is that a) it plays a roll in pre-mRNA splicing and b) that it can have an effect on neural stem cells. - That is all they know about it.
Because they know so little about it, they can nether confirm nor deny that it could be the cause of his differences. So maybe we have an answer.... maybe we don't.
So what is our next step? Wait. We wait maybe 5 years to check the collected DNA pool for someone else with a variant on the same gene. We wait and hope that more research is done on the PTBP1 gene to help us understand it's function and what a variant on this gene could mean and we submit his DNA to research studies. That's it. We have been discharged from our geneticist and have to wait to be re-referred once enough time has past to check the DNA pool or genetic testing technologies get more expansive. *Insert whoopee cushion sound-*
Gideon is a pioneer. What he has is very very rare. I guess we are the ones laying the path for someone else- if this gene variant is the answer.
I was hoping for some answers. I was hoping for some insight into what we could expect for Gideon's future. I was hoping to find out there were other people with children like Gideon that I could talk to. But now I am left with the unknown. An unknown that only leads to uncertainty and more questions. On the plus side, since we have no real diagnosis or prognosis Gideon is not limited yet by expectations that go along with those things. So I still have hope.
With Gideon there will always be hope, faith and love - no matter the circumstance - and I can live on that foundation. These things ground me and give a consistency, even when faced with exhaustion, dismay and unknowns. I know I would be a complete mess and my family would be a complete mess without my reliance on Jesus. We all need something to lean on, to propel us forward when all we want to do is make it all stop. I'm curious to know how other's in similar situations get through the thick of it all?
How do you come to terms with the offsetting unknowns in your life? How do you find that inner peace? What keeps you held together? How do you keep from falling apart?
It's wearing. Being admitted monthly with lung infections is growing old. His initial labs show that his recent dehydration is not making his kidney very happy. (He only has one that works... so it always makes me nervous when the labs suggest it's under stress) The Iv fluids should help. His chest xray is showing wear and tear from all the repeated lung infections which could lead to a chronic lung condition. My prediction is a course of antibiotics, a week at home of recovery, two weeks of smooth sailing and then a bought of vomiting and/or cold symptoms to begin the cycle again.
The pediatrician thinks he is aspirating and each admission is a new pneumonia being complicated by his asthma. I don't think he is aspirating while he eats. I think it's when he vomits. Will the dreaded g- tube help? I'm not entirely convinced.
I just wish it it would stop. The coughing, the infections, the fevers, the vomiting. I'm tired of being helpless when my little one is so sick.
The puffers are no longer holding off the coughing and breathing issues. Gideon is so uncomfortable that I'm going to have to bring him back to the ER. He's still refusing his bottles. I'm not sure we can fight this pneumonia at home.
Fussy, sad little ones who can't stop coughing make me sad ...
After Gideon woke up from an afternoon nap yesterday he was fussy and refusing to eat, so I brought him into the ER last night for some hydration. They got his IV in his arm on the first try! (He is notorious for bad IV starts) I feel a little bad, when the nurse came to do it I thought she was just drawing some lab work and I told her it was easier to get bloodwork out of him than to put in an IV... whoops! I'm so glad I didn't throw her off her game with that comment.
They also did a chest xray- Pneumonia Again!!! What???
Luckily the little guy was putting on a show last night. Although he has a cough, he was smiling and laughing, moving around the bed and playing- there was zero signs of him needing extra care (His O2 levels were fine) so they gave his first dose of antibiotic through his IV and sent us home with a 7 day prescription. I really think the new asthma medication has been helping to open his airway and prevented us an admission last night.
My big question is- What's with all the pneumonia?
Are these truly reoccurring pneumonias or are the antibiotics just not working? Seriously- He was admitted in January, March and April with Pneumonia. He also had a confirmed RSV (Respiratory Syncytial Virus) in March. Is this virus lingering longer than it should be? Do I need to disinfect my house and keep him in a bubble? Do I need more vigorous hand washing protocols? Do I need to google research how to improve immune systems in a possibly immune compromised child until I get tired and end up watching cat vs toaster videos? All very pressing questions...
I've been going over some of my paperwork for taxes and I thought I'd share some stats:
Gideon spent 56 days in the hospital or attending appointments in 2015- and that doesn't include trips to the local ER, Family Doctor or Audiologist. That's over 15% of his year! (With the additional days it's probably just over 2 months!)
The hours spent driving back and forth from London add up to about 6 days worth of driving alone (144 hours approx.).
Gideon had 83 days of in house services for OT, PT, Speech, Dietitian, Infant Development and Low Vision.
Gideon was put under general anesthetic for day surgery 6 times.
He was admitted in hospital 4 times.
We spent close to $250.00 on Parking.
Looking back on this, I'm fortunate to think- It could be worse! It's all about the perspective. There are families out there who have spent entire years living in the hospital with their little ones. There are families that are dealing with children so sick, they are counting the days. Praise the Lord that life with my two little Chickadees is busy and tiring but not despaired. When you enter the world of parenting special needs children, life and perspective grow so much larger. I think appreciation and love grows too.
As a side note: Gideon has been fevered and throwing up again - since Friday. The asthma medication has helped with his breathing but he is still coughing. Please send your thoughts and prayers this way that his appetite returns so his feeds will increase and we don't need to bring him in for an IV to improve his hydration.
During our last admission our physiotherapist dropped off a walker for Gideon to trial. She called it "The Pony". When we first put him in it he was pretty unsure about it. As soon as I said motorcycle and started making loud, very girly, poorly imitated, motorcycle sounds he seemed a little more impressed with the new contraption- but the moment it moved, he became unsure about the whole thing and really quite scared. Today was about the fourth time he has sat in it and I think he's starting to catch on.
To ease him into it, I started off by playing ball with him. (Something he really enjoys) I placed the ball in front of him, resting it on the handles, and he would push it off. After this he was feeling more comfortable and less nervous. He was pushing himself backwards and shuffling around in a circle a little. We even had some smiles.
Alex gets a little jealous of all the attention and support I have to give Gideon. I try really hard to make him a part of our activities but sometimes it's hard to get creative. He did a really great job playing ball with Gideon while he was in his pony/motorcycle. He also wants to help Gideon... I feel so bad when I have to tell him that he can't push him or stand on the walker when Gideon is in it. I can tell that his good intentions are crushed and he thinks that I am just scolding him. While Gideon was in the walker, Alex was super clingy too. Actually, even after I took Gideon out, he wanted to climb all over me. Sometimes I feel like there is just not enough mommy to go around.
I love my beautiful boys!
I'm sure it will get easier as the new equipment becomes more a part of our lives and less new.
Now I can't wait to get Alexander a new bicycle and watch them race around together. Birthdays are coming soon... well soon-ish. June is just around the corner right?
We just saw the pediatrician this morning and it looks like Gideon had RSV (Respiratory Syncytial Virus) when he was hospitalized in March. I think this is the second time he has had this virus. It imitates the common cold but can develop into more severe lung infections in little ones with lower immune systems or chronic lung conditions. This would most likely be the cause of his pneumonia - not aspiration. We did see a respirologist last week who thinks Gideon has asthma and it was his opinion that these hospitalizations were not pneumonia's but asthma exasperation. He has put Gideon on a new steroid puffer and upped his dosages. We will see where this leads. I don't think he had any of Gideon's medical records from the hospital he is usually admitted to; Those might help... My pediatrician rolled her eyes a little when I told her... LOL. Gideon is still coughing and a little fussy today. His feeds seem a little down. We had some lab work drawn just to check things out.
With a quick google search, it looks like symptoms can last up to 3 weeks. At least with the new inhalers, his coughing shouldn't be so bad.
At least it feels like spring is here -Alex even picked me some flowers.
Soon we will be cutting the lawn and complaining about the heat. Can't wait!
Yesterday a package slip with Gideon's name was put in my mailbox. I'll admit it stumped me. What could it be? Then I remembered that I had signed up for the Seedlings Braille Books Angel Program. This program offers 3 free books a year to visually impaired children between 0-21 years old in both Canada and the United States. You can choose 4 different books from their catalogue (contracted or uncontracted braille) and they will send you three of them. Did I mention it is free? Big time score! Seedlings also sells braille books at a very reasonable price with quite a bit of selection. I'm already soaking up their catalogue.
Today I picked up the package and I couldn't be happier!
The first book is Animal Shapes by Little Bee Books. It has the braille taped on under the words on each page and it has great textures that highlight each shape; heart, square, circle, triangle and star. The illustrations are adorable and the quality is great.
The second book is Little Bee by Edward Gibbs. This book again had the braille taped on under the words and is a traditional chase story. Little bee is chased by frog who is chased by snake who is chased by mongoose ect. There are no additional textures inside the book, but the bees wings on the cover are sparkly. Solid little book!
Book number three is my favourite. The Sensesational Alphabet by April Rofe just makes my happy. I didn't know what to expect when I put it on my list. To be honest, the cover put me off a little and I thought it might come off as a bit unprofessional/amateur/cheap. I was wrong!
There are scratch and sniff pages! (The smell stuck to my fingers- so good!)
There are movable parts!
There is actual representation!
There are bungee cords you can pull!
There are textures galore!
... and all these things are supported by braille, auditory buttons and sign language! MIND BLOWING
Over all, this is an amazing program that opens up the world of books to all visually impaired children in our communities- no matter what your income! How blessed are we to live in a time and place that these opportunities are available to us. Thank you Seedling Angel Program!
So we are back home. The oral antibiotics have not been going so well. He's been throwing them up. I'm not sure if it's a sensory thing or a taste thing. The syringe doesn't seem to go well and when I try and hide it in a bottle he doesn't seem to like the taste. Once he even threw up when I hid it in the bottle.
He seems to be doing better over all though. The cough isn't as bad and he's sleeping through the night. We had a weigh in and he is 17 pounds 5 ounces. Not bad, relatively, considering how sick he has been.
Here's a toast (as I raise my cup of coffee) to sunny warm days, fewer lung infections, and to amazing husbands who make all things so much better. I am so blessed to have you in my life.
It feels like a bad joke.
What do you get when you cross my little Gideon with vomiting?
We were admitted on Sunday with vomiting, coughing, a fever and pneumonia. The ER doc didn't even wait for the chest x-ray results before saying we would be admitted. (It helps when you've worked with the doc and have a history) We have become frequent flyers here.
John and Alex came to visit tonight. It felt nice to have the family together. I've been singing lullabies to Alex over the phone. John says it makes him smile. Being away is hard for everyone.
I think the plan is to finish off the iv antibiotics before being discharged. Tomorrow Gideon will have another chest x-ray and more lab work. We are also suppose to get a referral to a GI specialist and a pulmonologist. Hopefully tonight he'll sleep better and not wake up so much from coughing. I hope I get some sleep too. Between the coughing, the monitors beeping and the hospital bed, the lack of sleep and stress have been wearing. Last night I couldn't get Gideon settled and I had this sudden headache. I actually threw up and somehow triggered a sudden spasm in my airway that closed up my throat. I think I freaked the nurse out a little. I've never had my asthma triggered by throwing up before. Very odd. Maybe it was an allergic reaction to something I ate?Anyway, the nausea and closed throat only lasted a minute and with a little Tylenol and some sleep the headache was gone. Good thing too, because my little chickadee needs me.
Thanks for all the thoughts and prayers. We'll keep you posted as things progress.
On Wednesday Gideon and I had a long day. I guess it actually started on Tuesday night. We had to be at the hospital for 7am on Wednesday so we decided to spend the night in London so we wouldn't have to leave the house at 4am to get there. No brainer right? The Ronald McDonald house was all filled up as well as their extra hotel rooms so we had to book a hotel. When looking online all the hotels were sold out. I called one anyway and they said they still had a room for $175.00. I asked if there was any way they could give us some kind of discount and they asked us why we were coming to town. Luckily the hotel had a discount program for people coming into town for hospital visits and the room only ended up being $110.00. Actually it felt more like a small apartment than a room. Because we had checked in late, they upgraded us to a large suite. It had 2 bathrooms, a sunk in livingroom. a kitchen with a full sized fridge, a dinning table that could seat 8, and a separate bedroom with a king sized bed and an on suite that had a jacuzzi tub. Did I mention the balcony? I think the place had more closets than my house. I did enjoy a soak in the tub, but we didn't stay long because we had to leave by 6:30am. Gideon was in the operating room just before 9:00. He had an ear exam which ended up being a double myringotomy as one tube had fallen out and the other was blocked. He also had a hearing test (ABAER) and an eye examination under sedation. I won't have the results of the hearing test until our follow up. The eye exam went well. The doctor wants to see him in another 3 months. She said his contact lens prescription has changed and then asked if he would tolerate glasses- bifocals.
I didn't get into the post op room until just after 12:00. His O2 levels were fluctuating a little and he had a bit of a wheeze but we got through it. By the time we were discharged it was after 2:30. The post op nurses were really great. They even faxed his ear drop prescription down to the pharmacy so we could pick it up on the way out. I debated getting a hotel room and just spending another night in town but Gideon seemed like he could tolerate the drive home. Of course once we got home he started throwing up. He threw up twice. Yesterday he was still throwing up- lots. I hate it when his puke soaks through two layers of clothing and ends up in my bra. Anyway, today is better. The anesthetic must be making it''s way out of his system. He doesn't usually react this way to it. I think it's because he was under for so long. At least he has not thrown up yet today and he seems to be sleeping things off.
Overall I'd call it a success - a long, tiring, slightly stressful, success.
Since Gideon's verbal skills have been slow to emerge, I made a "communication board" for him out of a white board, some velcro and blank business cards that I drew on and laminated. One side of the board is white and the other side is black. I'm not sure how well this is going to work, due to his limited vision, but no harm in trying right? I have embossed braille onto each laminated card as well.
The idea is that I will show/hand Gideon a card while naming it and he will do one of these things:
a) reach for it
b) hold a gaze on it
c) not toss it away
...and then I will give him the corresponding item.
So far there has been limited success. He doesn't like the sound of the velcro. (I wonder if it reminds him of the velcro on his stander?) He hasn't reached out for any of the cards, as he tends to be cautious with new things. His eye gaze has been very difficult to establish because he often uses each eye separately and not together. He is also in the "throw everything within hands reach far away and listen to it crash" phase. Occasionally, he will just start to cry and turn his head away from the board when I present it to him. So yeah- limited success. On the up side though, when there is some success, he does like it when I take the card(s) away and give him one his favourite toys. (Cards = frowns Toys = smiles) I guess it's a work in progress.
Another little project I did was cover some of his blocks with black and white duct tape. These high contrast blocks are much easier for Gideon to see and hold his interest for much longer.
Last night, during my daily attempt to feeds Gideon solids, he opened his mouth for me and ate off his spoon!
You have no idea how long I've been waiting for this!
At meal time, Gideon usually will deal out a number of avoidance techniques: he will clamp his mouth shut, push away the spoon, tilt his head back or shake his head no. I place a little puree on his lips and am lucky if he licks it off. Confession - Occasionally I revert to dumping. Meal time has been primarily "food experience time". This has been going on for over a year. You have no idea how difficult it has been to stay personally positive, make his meal times positive and to continue this seemingly futile pursuit.
I have been trying to model eating recently by using a big silver spoon and feeding myself large mouthfuls in front of him. Literally right in front of his face. Last night he had the biggest smiles, he was almost laughing at me, as I dished large spoonfuls of curry into my gaping mouth, smacked my lips and announced how good it was with a loud "Mmmmmmmm". To my surprise, when it was his turn, he actually opened his mouth like a little baby bird. He opened his mouth for me over and over again. Sometimes he would stick his tongue out for me to dab a little puree onto it. For one bite, he actually reached for my hand with the spoon and brought it towards his mouth! I was actually feeding him and he was actually welcoming the food into his mouth.
I am seriously ecstatic. I pray that this is a break through for us!
Last Sunday, we brought Gideon in to the ER and they sent us home with medication and a pat on the back. Sunday night Gideon woke up with a fever (101.7- not a radio station). With some Tylenol, cold compresses and a dip in the sink, his fever came down. He woke up with a very mild fever but seemed better on Monday. We went down to London, thinking the Geneticist would be able to tack on some extra lab work for us but when we got there, the secretary just handed us the requisition and told us the doctor wasn't expecting to see us. After all the lab work was drawn, we went to the cafeteria for lunch. Of course Gideon threw up everywhere while John was bringing Alex to the washroom. The lady at the table beside us was so kind and rushed over to help us with a pile of napkins. She even wiped my boots saying "Be careful you don't slip". Gideon and I were both drenched. That was our cue to go home. Luckily the drive was good and there were no weather concerns.
Needless to say, after a fussy night and his refusal to eat, I brought him to Owen Sound where they admitted him. His O2 stats were in the high 70's to mid 80's so they had him on a little oxygen and they hooked him up to an IV to get him medicated and hydrated. The pediatrician on call was really good with Gideon. He introduced himself by touching Gideon gently while talking to him. He even asked the staff to make a sign for Gideon's room. I have to say it was above and beyond!
Although it wasn't a long stay (we got home on Thursday), it feels good to be home. I know Alex is really happy about it too. The antibiotics seem to be doing their job and Gideon is on the mend. There is suppose to be a referral for a pulmonologist coming our way too, so maybe there will be some more investigations into his repeated lung infections.
So I guess it was just another normal week in our little house.
1. What did Gideon's latest trip to the ER reveal?
D) All of the above
2. What did the ER doc try and discharge us with before requesting a chest xray?
A) Bad cold
B) Viral Illness
C) Over Zealous mom
D) All of the above
3. How did Gideon present in the ER?
A) O2 levels ranging from 78-95%
B) Lethargic and fussy with laboured breathing
C) Vomiting in the room
D) All of the above
4. What did the doc say when she discharged us?
A) Take these steroids and antibiotics for the next 4 days
B) Come back if he is still vomiting
C) I don't think we should do any lab work cause it will only cause him more discomfort.
D) All of the above
If you answered D to all of the above you win. Good job winners.
My poor little Gideon is sick. He's not able to sleep. I can't console him. He's throwing up. His feeds are small. We are suppose to see our geneticists tomorrow to have our blood work taken for the genome sequencing test. If we go, I'm going to ask her to tag on some lab work. It's so frustrating when an ER doc who doesn't know your son looks at you down her nose because you don't have a medical degree. If I come in saying my son has a history of aspiration with pneumonia, along with asthma and I am concerned about his O2 levels don't look at me smugly and say his O2 levels were fine when he presented at triage. I'm sure they improve when he is sitting up and screaming because a strange lady is poking him with a thermometer. Lots of air coming in while his heart rate sky rockets is bound to improve the O2. What I'm worried about is when he is in supine position, coughing, and too lethargic to even open his eyes all the way.
The thing is that Gideon still does not have a diagnosis. There are many things out there that can present like a "viral illness" and really be caused by something systemic. I really am happy that we can try fighting this thing in the comfort of our home and not be admitted but there is an anxiousness about it all.
The Plan: We'll see how tonight goes. If he's up for it in the morning we'll head down to London to see our geneticist and try to have some lab work done on him while drawing for the genetic test. If he's sick as a dog, the London hospital is not a bad place to be I guess.
I just received an email from my professional organization CHIMA that they will be willing to waive a large chunk of my Continuing Professional Education credits for this term because of my extenuating circumstances! With out these credits, I would no longer be eligible as a member of my college. I only need to obtain 1.5 credits by the end of the month and I can continue being certified as a HIM.
This morning while helping to get the boys out the door to daycare, Alex (my three year old) made me smile. They have to leave the house before 7am so John can make it to work on time and this means breakfast for Alex is a bit rushed. Often he has to bring half of it in the car with him to eat. (This morning he had only eaten one pancake before it was time to go.) He had a drinkable yogurt in one hand and a toy airplane in the other. I stuck a banana in his right coat pocket and asked if I could put his airplane in the other so he could hold his second pancake. He said he wanted to hold his airplane and didn't want it in his pocket. I asked if he could hold both the airplane and the pancake. He looked at me thoughtfully and said "I don't have three hands - *pause* - put the pancake in my pocket."
Today is Wednesday. This means that the boys are both in daycare and I am home alone. I've done the dishes, put some laundry away, did a devo, and tidied things up, so now it's time for some *relaxation therapy.
*Relaxation therapy = Listening to the Decemberists, drinking coffee and playing with some water paint in the beautiful sunshine coming in through my window.
This is distracting me from my worries.
- Gideon threw up again yesterday at daycare and his coughing and breathing are not exactly on target. We are seeing our pediatrician today. I really hope the pneumonia is not back again.
- We saw genetics last week. We have now applied for approval to have the "Whole Exome Sequencing" genetic test funded. This will take months. Once we have approval to have this test covered, we (John, Gideon and I) will all submit blood samples to test. The results of this blood test can take up to a whole year for results. And so the wait continues...
- We had our first consult with a neurologist last week too. We looked at the MRI he had in Sept and over all there are not any really big structural abnormalities. This is good. What is worrying is that his myelin sheath (the nerve/axon coverings) in parts of his cortex are not quite the thickness they would expect for someone his age. This could change the speed of the transmissions coming to or from his brain. This change in speed could result in numerous different outcomes- Behavioral changes, comprehension/learning difficulties, ability to focus etc. The thing is though that these nerve coverings are not fully developed until around the age of two so this means there could still be some changes/brain development to occur. She has recommended another MRI. There was also the suggestion that we should keep our eyes open for possible signs of Gideon having a seizure- not necessarily the full out shaking kind, but the more subtle type that could look like spacing out, repeated muscle tensions or reflexive movements. If we suspect something is going on than we should have an EEG done.
And so I turn to my distractions.
What are your distraction techniques, that pull your eyes and mind away from the chaos that life meets?
Gideon was hospitalized again last Wednesday with a possible aspiration pneumonia and an asthma exasperation on top. This is news to us. We didn't know that he could have asthma. He even stopped eating for a day. I think the aspiration occurred while he was vomiting over Christmas.
We are home now. It always feels so good to come home. Even Gideon seemed happier to be at home. This means more antibiotics and more puffers. So far he has only vomited once since we've been home (unfortunately it was right after he had taken his antibiotics) and he has been sleeping lots. He also has way more energy since before the hospitalization and is moving and vocalizing more. His feeds are still so-so but I think over all he is on the up- I hope.
I wish I knew what was making him have these vomiting episodes. Is it an imbalance? Is he just more prone to picking up bugs? Does he have an allergy? Is there a structural issue? Is his gagging leading to vomiting due to an oral sensory issue? Is the asthma making it harder for him to breath thus exasperating his aspiration and inducing a vomiting session? Or maybe it is a combination of all of the above?
I'm always looking for answers- but I need to come to a point of acceptance that sometimes life doesn't hold any; That there are unknowns out there that are beyond my comprehension and things that will always be unexplained. This is something I still need to come to terms with. I need to stop looking and start having faith in Gideon as he is, leaving all my questions behind, moving forward with a healthy "who cares attitude". Somethings matter and other things don't and I guess I should reexamine these priorities and leave my obsessive Answer Quest behind. I think this would look like a laid back, living in the moment type of lifestyle that is selective of my passions.
It feels like I often use Gideon's low vision as an excuse for many of his delays.
He's not crawling or sitting on his own? - Oh, kids with visual impairments can have gross motor delays. I've heard they can even be up to a year behind. No or little visual stimuli will mean decreased motivation for looking around, making his neck muscles weak.
He's not transitioning to solids? - Oh, I guess he hasn't been able to see us to model that behavior. Also he has a hard time seeing the food coming so.. maybe it's been a startling or jarring experience.
He's still mouthing his toys? - He's just looking for tactile experiences, plus he's not been able to see how to play with them through modeling.
Theses are really just cop outs. I know the vision piece is part of the issue but it is not the whole reason for all the delays. I'm sure there is far more going on, things I don't want to admit to. I know he has low tone. I know he has a gross motor delay. I know he is delayed developmentally.
Today we met with our Physio therapist along with the vendor for our new stander. Casually, while filling out some forms to have the stander partially covered, physio asked if we had looked at wheel chairs for Gideon. *heart sinks and lump in throat emerges* There really hasn't been much talk about Gideon's prognosis or his very slow progress. I said that at this point he was still light enough to carry around and that we had just transitioned out of the bucket car seat. She indicates that we can fill out the forms now to just cover the stander and always update them later... if we need to.
Does it get any easier, having your hopes and expectations squashed?
I made Oliebollen (spelling?) a Dutch new years treat for my husband this year. Disclosure- My side of the family is not Dutch and I've never really made these before. I found a recipe on the good ol' internets. I was worried that the oil was going to be too hot and that the insides might not cook but I think they turned out well. None of the ones I ate were under-cooked. John said he didn't want raisins in them, so I put apple in them instead. I think I could have put a bit more in, but I'll know for next time. Traditionally these are eaten with powdered sugar but I didn't have any, so I just put some white sugar into my coffee grinder and made some of my own.
I'm not much of a deep fryer and I really don't know what to do with the left over oil. Any suggestions?
While I was making the Oliebollen, John put on an Andre Rieu DVD that was my father-in-laws. This was a nice surprise. Albert really enjoyed watching these and listening to the "Flying Dutchman". It's nice to carry on some traditions within our own family.
New years day was full of warm happy feelings and full tummies!
What new years traditions do your families keep? Do you have tips or additions for my oliebollen?