Janna is 10 months old today! And Mom was relentless with the PT therapy today. (poor Janna!). She finally seems healed enough from G-tube surgery to make more of a go at learning new ways to move so that's what we did today.
Our PT loaned us a very institutional looking chair. When I first saw it I was a bit unsure but after seeing Janna in it, I love it! We worked in the chair today and did some side to back rolling and some tummy time (which she hated)
Here is the video of our chair work. Janna is really working hard to keep her head up!
Saturday, May 30, 2009
Friday, May 29, 2009
May 29th, 2009. Janna Inchstone: rolling from Side laying to Back.
Janna has made another inchstone this week. She's now able to roll from her side to her back. This is wonderful to see, we hope it progresses so she's able to do a full roll from her tummy to back.
(insert rolling video if I can find it.)
She also really enjoys the outside, just like her parents, but isn't tolerating bumps and jostling too well right now so although we'd like to be doing more walks and exploring we're pretty much just hanging out in the backyard and deck with her right now. Ah well, it gave me a good excuse to improve our backyard space :).
(insert rolling video if I can find it.)
She also really enjoys the outside, just like her parents, but isn't tolerating bumps and jostling too well right now so although we'd like to be doing more walks and exploring we're pretty much just hanging out in the backyard and deck with her right now. Ah well, it gave me a good excuse to improve our backyard space :).
Sunday, May 24, 2009
May 24th 2009. G-Tube Learning and Med Weaning
So now we're almost into June and I haven't updated at all. Yeah I can be a procrastinator.
Janna had G-tube surgery in mid April and did as well as could be expected. She had a bit of trouble tolerating her old NG rates so we had to start off pretty slow but she was tolerating bolus feeds - (although she needed to be held each feed in the beginning.)
Now she's doing a bit better, she's up to her old 90ml/hr NG rate, which is what she was at before surgery. We've already experienced Granulation Tissue and some stoma leakage and discovered wonderful products like:
"The Bone" a cath securing device used to stabilize her long PEG tube without the use of tape.
Calmoseptine a wonderful barrier cream to help sooth irritation caused by stoma leakage and lessen granulation tissue and Mepilex, so far my favourite absorbative/wicking dressing.
I've also managed to change her outer bumper to a 90degree "fixator" made by the good people at Corflo (UK) which has made stabilizing her tube that much easier and thus more comfortable for her.
One thing that is troubling is her gagging episodes. She still has them, even without the NG tube so it's dawning on me that the NG wasn't causing them. She'll cough and gag and gag until she vomits, sometimes it's just a gag out of nowhere.
I'm wondering if it's Neuro-related; if perhaps some of the muscles in her esophagus are floppy, working too slowly or not at all? We'll be doing another swallow study in the next few months and hopefully that will shed some light on things.
Med weaning is going well. It's nice to be finished with the Prednisolone. The Amlodipine and Vigabatrin is slowly being weaned as well. Soon, if all goes well; we'll only have 2 meds to deal with. What a dream!
She's also shown some gains in her vision. The improvements were drastic enough for our developmental pediatrician to agree that we must have quite good seizure control (Yay!).
Of course she's still pretty floppy, she has made some gains in head and trunk control but is still far behind her "peers" at almost 10 months old. We've got a Physiotherapist that she's scheduled to see once every 2-3 weeks and we're hoping we can give her some opportunities to make the most of whatever mobility she'll be able to have.
So we trod on. Some days are better than others. We're still housebound the majority of the time because Janna doesn't tolerate moving around a lot. Bumps, jostles and changes in position are difficult for her and will often bring on a gagging episode along with a vomit. I hope that changes, it's difficult not to be able to go out and about with her, especially as the nicer weather is upon us.
Janna had G-tube surgery in mid April and did as well as could be expected. She had a bit of trouble tolerating her old NG rates so we had to start off pretty slow but she was tolerating bolus feeds - (although she needed to be held each feed in the beginning.)
Now she's doing a bit better, she's up to her old 90ml/hr NG rate, which is what she was at before surgery. We've already experienced Granulation Tissue and some stoma leakage and discovered wonderful products like:
"The Bone" a cath securing device used to stabilize her long PEG tube without the use of tape.
Calmoseptine a wonderful barrier cream to help sooth irritation caused by stoma leakage and lessen granulation tissue and Mepilex, so far my favourite absorbative/wicking dressing.
I've also managed to change her outer bumper to a 90degree "fixator" made by the good people at Corflo (UK) which has made stabilizing her tube that much easier and thus more comfortable for her.
One thing that is troubling is her gagging episodes. She still has them, even without the NG tube so it's dawning on me that the NG wasn't causing them. She'll cough and gag and gag until she vomits, sometimes it's just a gag out of nowhere.
I'm wondering if it's Neuro-related; if perhaps some of the muscles in her esophagus are floppy, working too slowly or not at all? We'll be doing another swallow study in the next few months and hopefully that will shed some light on things.
Med weaning is going well. It's nice to be finished with the Prednisolone. The Amlodipine and Vigabatrin is slowly being weaned as well. Soon, if all goes well; we'll only have 2 meds to deal with. What a dream!
She's also shown some gains in her vision. The improvements were drastic enough for our developmental pediatrician to agree that we must have quite good seizure control (Yay!).
Of course she's still pretty floppy, she has made some gains in head and trunk control but is still far behind her "peers" at almost 10 months old. We've got a Physiotherapist that she's scheduled to see once every 2-3 weeks and we're hoping we can give her some opportunities to make the most of whatever mobility she'll be able to have.
So we trod on. Some days are better than others. We're still housebound the majority of the time because Janna doesn't tolerate moving around a lot. Bumps, jostles and changes in position are difficult for her and will often bring on a gagging episode along with a vomit. I hope that changes, it's difficult not to be able to go out and about with her, especially as the nicer weather is upon us.
Monday, May 11, 2009
November 5th, 2009. AKA 15 months old now.
Yes I'm a bad bad mom. I didn't do a Happy Birthday post for Janna (tsk tsk) I've been back at work the past 3 months and we are blessed to have Grandma taking care of Janna full time.
Some of the good news lately has been:
Overall she is doing well though. Still not sitting, still not smiling a whole lot or laughing, still doesn't have the ability to grasp and pick up toys, still doesn't have head control and is hypotonic through her neck and trunk but we do see small improvements in her during tummy time and in her ability to lift and maintain a head up position for short periods of time when being cuddled. We'll happily take that and keep encouraging, watching and hoping for more improvements as time wears on.
Some of the good news lately has been:
- her hips were given a pass by ortho
- she still seems seizure free
- she is developing slowly at her own pace, it's great to see the tiny improvements she's making.
- we should have her specialized seating and stroller in the next month along with a specialized therapy wedge designed by our PT
- we should be getting a stander for her within the next 4 months
- all and all her quality of life is good, we even see a rare glimmer of a smile from time to time.
- We've found a wonderful respite worker who Janna seems to respond well to.
Overall she is doing well though. Still not sitting, still not smiling a whole lot or laughing, still doesn't have the ability to grasp and pick up toys, still doesn't have head control and is hypotonic through her neck and trunk but we do see small improvements in her during tummy time and in her ability to lift and maintain a head up position for short periods of time when being cuddled. We'll happily take that and keep encouraging, watching and hoping for more improvements as time wears on.
Wednesday, March 4, 2009
March 4th, 2009 AKA SPASM Free!
You couldn't wipe the smile off my face after our last Neuro appt. Janna appears to be spasm free after we endured a 3 week hospitalization for ACTH treatment of her Spasms.
I knew that we were seeing good things result from the ACTH, she was making more noises, she was fixing her gaze on things again, she was trying to get her hands up to her mouth all good things but I wouldn't have dared to dream we'd be spasm free. Even our Neurologist was surprised, he didn't think we'd necessarily see that kind of benefit from the ACTH due to the extent of Janna's birth injury. I'm not sure we're completely seizure free but I can live with a few seizures as long as the spasms do not come back.
So now we're working on a very slow wean of the Steriod/Hormone and she's on a vast cocktail of meds still; Nitrazepam, Vigabatrin, Pregnisone, Amlodipine, Lansoprazole but we'll be slowly weaning the Pregnisone and then the Amlodipine and then the Vigabatrin. Hopefully she continues to do well and we can get away with only the Nitrazepam and Lansoprazole going forward.
Our next hospital visit will be for her G-tube in mid April and then at the same time we have clinic appointments with Neuro and Ortho. She's now in a Pavlik harness for Developmental Hip Dysplasia and we'll be stuck with it for 23 hrs per day until May (Although I'm sure it will be necessary to give her a break from it during her surgery and recovery. I'll be discussing this with our orthopedic surgeon when we have our clinic appointment.)
So we get to chill out at home for awhile with only pediatric appointments each week until mid April (Yeah!)
I knew that we were seeing good things result from the ACTH, she was making more noises, she was fixing her gaze on things again, she was trying to get her hands up to her mouth all good things but I wouldn't have dared to dream we'd be spasm free. Even our Neurologist was surprised, he didn't think we'd necessarily see that kind of benefit from the ACTH due to the extent of Janna's birth injury. I'm not sure we're completely seizure free but I can live with a few seizures as long as the spasms do not come back.
So now we're working on a very slow wean of the Steriod/Hormone and she's on a vast cocktail of meds still; Nitrazepam, Vigabatrin, Pregnisone, Amlodipine, Lansoprazole but we'll be slowly weaning the Pregnisone and then the Amlodipine and then the Vigabatrin. Hopefully she continues to do well and we can get away with only the Nitrazepam and Lansoprazole going forward.
Our next hospital visit will be for her G-tube in mid April and then at the same time we have clinic appointments with Neuro and Ortho. She's now in a Pavlik harness for Developmental Hip Dysplasia and we'll be stuck with it for 23 hrs per day until May (Although I'm sure it will be necessary to give her a break from it during her surgery and recovery. I'll be discussing this with our orthopedic surgeon when we have our clinic appointment.)
So we get to chill out at home for awhile with only pediatric appointments each week until mid April (Yeah!)
Thursday, January 15, 2009
January 15th, 2009 AKA ACTH Therapy
We didn't see an end to her seizures on the Nitrazepam, we saw a what seems like a reduction with the combination Nitraz/Vigabatrin but I can't say she's been seizure free.
It looks like ACTH is the next thing on the agenda. Janna will be admitted to BCCH next week. We're waiting on a phone call from Neurology to find out when we're to head in.
Because of the risk of some serious side effects I told them I'd rather be admitted with her so she can be monitored closely. This will be a "low dose" ACTH course and if she tolerates it after the first few doses we'll be released and continue with it to see if we see a break in seizure activity. If that doesn't work we'll go to regular dose ACTH and if that doesn't work, on to the next thing although I'm not sure what that will be.
On a positive note, she has gone back to lifting her head and she's much less floppy now than she was with the pheno/nitraz/vig combo so we're seeing more movement out of her.
I have this love/hate relationship with her NG tube. She coughs and gags on it quite a bit and I know it makes her uncomfortable but it's the only way to get nutrition into her at the moment. She has gained weight, she's now at 12lbs 8oz and on track for weight gain. Our G-tube surgery consult is on Feb 3rd and I still wince when I think of her with a G-tube and worry about how well she'll be able to tolerate it, after surgery pain etc. I know she needs it right now so I'll get over my own issues with it and move on.
I do find I'm giving her more belly tickles and kisses now that I know there is a countdown to the surgery. I know I'm going to miss that beautiful little tubeless belly.
And onward we trod. Waiting for that call back from Neuro.
It looks like ACTH is the next thing on the agenda. Janna will be admitted to BCCH next week. We're waiting on a phone call from Neurology to find out when we're to head in.
Because of the risk of some serious side effects I told them I'd rather be admitted with her so she can be monitored closely. This will be a "low dose" ACTH course and if she tolerates it after the first few doses we'll be released and continue with it to see if we see a break in seizure activity. If that doesn't work we'll go to regular dose ACTH and if that doesn't work, on to the next thing although I'm not sure what that will be.
On a positive note, she has gone back to lifting her head and she's much less floppy now than she was with the pheno/nitraz/vig combo so we're seeing more movement out of her.
I have this love/hate relationship with her NG tube. She coughs and gags on it quite a bit and I know it makes her uncomfortable but it's the only way to get nutrition into her at the moment. She has gained weight, she's now at 12lbs 8oz and on track for weight gain. Our G-tube surgery consult is on Feb 3rd and I still wince when I think of her with a G-tube and worry about how well she'll be able to tolerate it, after surgery pain etc. I know she needs it right now so I'll get over my own issues with it and move on.
I do find I'm giving her more belly tickles and kisses now that I know there is a countdown to the surgery. I know I'm going to miss that beautiful little tubeless belly.
And onward we trod. Waiting for that call back from Neuro.
Monday, January 12, 2009
January 12th, 2009. AKA Vigabatrin
There's alot to tell.
At our 3 month EEG Janna was diagnosed with Infantile Spasms and we started on Vigabatrin. I was not in the mood to update the blog, I wasn't in the mood to do much else but bury my head in a pillow but hey - no time for that really when you're caring for an infant with a serious chronic condition.
The medication seemed to be doing it's job, we were getting Janna back. Still no real smiles and she was very floppy but we were seeing her more focused which was a bit of a relief. But a few weeks later I noticed some strange, very subtle rhythmic movements she was making with her arms and legs. I called Neuro, we had an emergency EEG and It turned out Vigabatrin wasn't our wonder drug. Janna was still having a large number of seizures.
We were admitted to BCCH and a new drug was added to the regimine; Nitrazepam. The idea was to completely wean Phenobarb (which she's been on in low dose since NICU) and begin a wean of Vigabatrin and introduce nitrazepam.
At first she had a cocktail of all three. This basically turned her into a drooling rag doll. Another side effect of the Nitraz is incoordination of suck and swallow so it became impossible to bottle feed her. She was incredibly floppy and sleepy but we were seeing more focus from her when she was awake and we were not seeing as many seizure clusters from her. Once the levels for Pheno and Vig came down, she was fitted with an NG feeding tube I was shown how to manage it and we procured the necessary equipment for interal feedings; we were released with a plan for weaning two of her anti-convulsants and continuing on with the Nitrazepam.
The wean started well enough. We even began some vision therapy. (We'd discovered during our Ophamology referral in-hospital that she has a Cortical Vision Impairment) but when we stepped down to only 125mg of Vigabatrin per day, on the third day - we began seeing an increase in seizure clusters and the duration of each was longer than we'd seen since we'd started the Vigabatrin. I placed an emergency call to the resident Neuro on call at BCCH, chatted with him and it was decided that we'd step back in our Vig wean to 250mg per day and keep the Nitraz steady until our follow up EEG scheduled that week.
So fast forward to that EEG - we found she was still having seizures and many of them were very subtle with almost no outward signs. In total neuro counted 30 in a 30 minute EEG time span. That was last week.
Our next plan of attack is to up the nitrazepam and keep the Vig at the same dose. We were to try this for a week and follow-up report to neuro. If we are still seeing outward signs of seizure, we'll arrange to be admitted to BCCH again and start low-dose ACTH.
One positive thing that came out of last week is that we were introduced to Canuck Place. Janna is now officially a "Canuck kid" and we'll have access to that resource when we need it.
As of today, I'm starting to feel a bit cautiously optimistic that the Nitraz and Vigabatrin might just be helping. She's regaining some head control and I counted less seizures today.
Hopefully this trend continues.
At our 3 month EEG Janna was diagnosed with Infantile Spasms and we started on Vigabatrin. I was not in the mood to update the blog, I wasn't in the mood to do much else but bury my head in a pillow but hey - no time for that really when you're caring for an infant with a serious chronic condition.
The medication seemed to be doing it's job, we were getting Janna back. Still no real smiles and she was very floppy but we were seeing her more focused which was a bit of a relief. But a few weeks later I noticed some strange, very subtle rhythmic movements she was making with her arms and legs. I called Neuro, we had an emergency EEG and It turned out Vigabatrin wasn't our wonder drug. Janna was still having a large number of seizures.
We were admitted to BCCH and a new drug was added to the regimine; Nitrazepam. The idea was to completely wean Phenobarb (which she's been on in low dose since NICU) and begin a wean of Vigabatrin and introduce nitrazepam.
At first she had a cocktail of all three. This basically turned her into a drooling rag doll. Another side effect of the Nitraz is incoordination of suck and swallow so it became impossible to bottle feed her. She was incredibly floppy and sleepy but we were seeing more focus from her when she was awake and we were not seeing as many seizure clusters from her. Once the levels for Pheno and Vig came down, she was fitted with an NG feeding tube I was shown how to manage it and we procured the necessary equipment for interal feedings; we were released with a plan for weaning two of her anti-convulsants and continuing on with the Nitrazepam.
The wean started well enough. We even began some vision therapy. (We'd discovered during our Ophamology referral in-hospital that she has a Cortical Vision Impairment) but when we stepped down to only 125mg of Vigabatrin per day, on the third day - we began seeing an increase in seizure clusters and the duration of each was longer than we'd seen since we'd started the Vigabatrin. I placed an emergency call to the resident Neuro on call at BCCH, chatted with him and it was decided that we'd step back in our Vig wean to 250mg per day and keep the Nitraz steady until our follow up EEG scheduled that week.
So fast forward to that EEG - we found she was still having seizures and many of them were very subtle with almost no outward signs. In total neuro counted 30 in a 30 minute EEG time span. That was last week.
Our next plan of attack is to up the nitrazepam and keep the Vig at the same dose. We were to try this for a week and follow-up report to neuro. If we are still seeing outward signs of seizure, we'll arrange to be admitted to BCCH again and start low-dose ACTH.
One positive thing that came out of last week is that we were introduced to Canuck Place. Janna is now officially a "Canuck kid" and we'll have access to that resource when we need it.
As of today, I'm starting to feel a bit cautiously optimistic that the Nitraz and Vigabatrin might just be helping. She's regaining some head control and I counted less seizures today.
Hopefully this trend continues.
Subscribe to:
Posts (Atom)