Well another long hiatus from blogger land and I'm truly sorry. It's not that I haven't been checking in, I have, I just am up to my eyeballs in crap again and haven't had time to sit and do anything. Not that having 4 kids under the age of 6 helps with this either :p.
The crap is kids! I know they cause all types of problems but really I'm tired of the sick kid thing now.
So we were back in the hospital with Natasha in March for yet another 10 days. Our surgeon panicked and had us admitted for"observation". Now I'm not too worried about the whole "observation" thing as long as they actually do something while we are there. So we had a chest xray and waited 2 entire days for a consult with GI for, of all things, a g-tube insertion!!! I am so not happy about that prospect and have vetoed it until they can come to us with concrete evidence that it is in her best intrest to have one done. Of course that means that she needs to have the fundo as well. It defeats the purpose of having her tube fed if the reflux issue isn't dealt with as well. We had a swallowing study done with mixed results. Turns out she has a crappy suck reflex, which I knew about, and wasn't taking in large bolus' of formula at a time. It made it incredibly tough to watch the very small amounts go down and see where it went. We managed to piss her off royally when they changed the thickness of the formula and then the nipple on the bottle. She managed to get a bit in but easily got frustrated with it. They called it off when she got to the nectar thickened and sent us back up. Results in, she is micro aspirating the formula at thin and 1/2 nectar so we are to continue with nectar thick feeds and follow up with her tube feeds if she shows signs of distress. Nothing I wasn't already doing but it means that we can feed her by bottle while in the hosp. They put her NPO or nothing by mouth Thursday morning and by 8pm she was cranky not being able to calm and feed that way. She doesn't mind the soother but isn't too fascinated with it.
I was asked by the GI fellow that came up to assess Natasha what it is we want out of all of this. It struck me a very complicated question. What do we want? healthy kids obviously, but more to the point what is it that we are actually willing to do to get there? We have already done so much of this with Leigha that it seems very deja vu ish. I'm trying to keep them separate in my head since they have the same types of symptoms but they are two different kids. The cyanosis, reflux and feeding issues are the same in both but they both have different reactions to it. I don't think having Natasha get a g-tube is going to solve the issues at hand and from previous experience with Leigha we noted that once that tube went in everyone backed off and we are still fighting to have anything further done. They are both still refluxing up and that is therefore bypassing the cleft and into their lungs, so how is it helping? I talked to the original Speech Language Pathologist (SLP) I saw on the very first visit to the Stollery we had with Leigha all those years ago, she recommended a genetic consult and another opinion in regards to the repair of the cleft. So I managed to get the consult with genetics set up and plan on asking our pediatrician if she thinks our ENT is actually serious about fixing this or if we should look to someone else for the repair. I'm trying to be practical and I know that he may say no but I'd at least like to offer him the option to fix it before we go to someone else. He knows the girls, knows show they react to the surgeries.
Talking to everyone yesterday I discovered that they really have no grasp on where to start. Our ENT and pediatrician are following a possible allergy issue called Eosinophillic Esophagitis but the GI guy came in and said that she's too young to be considered for it. The GI guy is looking at the reflux as the only cause of the grey spells but my gut says, and has been saying, that they are missing something.
I feel like standing in the hallways and just yelling at the top of my voice for them to "JUST DO SOMETHING ALREADY!!" .
So they sent us home and we have been going about our lives here at home pretty much as we were before. I'm not tube feeding Natasha, for the most part I use the Ng tube for her meds (it keeps her from refluxing all day, very odd but it works) and we have finally found a bottle with a nipple shape she likes ( thank you Platex ortodontic!) and we have to swaddle her at bedtime :o Back and forth it seems every second day for appointments, almost like I live there some days, maybe they'll give me a parking pass!!
Showing posts with label Updates. Show all posts
Showing posts with label Updates. Show all posts
Tuesday, 26 April 2011
Tuesday, 21 December 2010
The Long and Short of it All
So I thought I'd try and summarize the last 3 months without boring everyone to death with long babbles...There's really only one big thing....
I am no longer pregnant!! I know, about time to say something ( honestly with 4 kids it is very difficult to get anywhere near an actual computer for any length of time without chaos ensuing) As I type they are currently trapping each other in the toy box and knocking on it making the dog go retarded thinking someone is at the door. So I had said baby on Oct 27th....a GIRL!!
Meet Natasha Lynn born at 804 am :) 7lb 7oz and 19inches long. She is now 8 weeks old, man how the time flies, and changing every day. The best part is that she is finally chunking up a bit, she has little rolls on her thighs :o
The transition of going from 3 to 4 kids was surprisingly easy other than the fact that Neil has been working out of town for the last 7 weeks ( do the math...means he left a week after smurf arrived :o ). Trying to get everyone where they need to be on a weekly basis has proven to be very trying at times with only the in laws around to help out. The smartest thing I did was have my girlfriend clean my house every 2 weeks for me...one less thing to worry about :)
With Christmas charging up on me on Saturday I find myself completely unprepared and honestly not to worried about it :p Things will get done no matter what and we will have a wonderful day despite being dis-organised.
I am sleep deprived and haven't done anything useful this week....and I don't care :) I am looking so forward to Neil being home tonight for a few weeks (he goes back out Jan 3rd ) and the help he can provide. Today it seems I have done nothing but yell at them to smarten up since about noon. But after tonight I will have a partner to help out, and I can have a nap!
I'm going to make a true effort to get back into blogging. It's good for me. Putting it out into cyber world means I don't have to blackberry it to Neil all the time when I have some random thought :p
Thursday, 2 September 2010
Welcome back???
All right I suck. I admit it. I have neglected to inform the bloggy world of anything in our house. And not because there is nothing happening, mainly because I am just too lazy to do it. All I want to do is sleep, 22 hours a day to leave room for the requisite food requirement and peeing of course.
But alas with 3 kids there is no way on God's green earth I can do that. They'd burn my house down around my ears or kill each other. But they are surprisingly resourceful if need be. Ryan is now capable, at the age of 4, to get cereal for himself and turn on the tv, which means I can lie in bed pretending that they aren't all awake and that I have to get up sooner rather than later. The added bonus to that is with Leigha and her feeding tube...she is confined to her bed until I go get her!!! So minimal fighting in the mornings!!!
I have made it to 32 weeks pregnant!! and haven't been up to much really. I went on a scrap retreat the last weekend of August and..( insert yelling from the girls) had contractions all weekend and cankles (made driving home fun :p). They haven't really let up much on both aspects so I have been "confined" to "resting". K so I have 3 other kids, one with medical issues, my doc knows this so the words "try" were very strongly put at my appointment on Tuesday. I just have to make it another 3 weeks and I've made it to the "safer" zone. I am feeling the desire to clean, cook and generally stock up so have had to plan my days so I am not on my feet a lot and have to pay for it, Neil is not good at the foot rub.
I still feel "good" in the happy sense that I can move freely without crying and am not getting embarrased trying to dress myself around the large lump in front. I am at the point where I can't even put on underwear without assistance. And Thank GOD this is "summer" (hahahaha, well not here but..) so I don't really need socks. With Leigha I actually stopped wearing them due to the fact that I could no longer reach my feet without falling over and Neil wouldn't help me without laughing...so not worth it. Considering it was winter for the bulk of the largeness portion of my pregnancy with her, no socks was not a brilliant idea but I worked with what I had.
Nathaniel is growing like a weed, 70Lbs now :o He is huge and eats more than Neil at meals. But again we are entering a growth spurt and have the wussy, cry at the drop of a hat kid on our hands. Karate/Jui Jitsu ( I have no clue what it's called) has helped with the self esteem issues and he asks daily when he's going again or when the next time is. Currently he is down 2 teeth over less than 3 days, courtesy of self managed care :) He wiggled those little things until he swallowed one ( too funny when Neil went to look for it and found not a trace, we think he was so excited that he forgot to spit it out and swallowed it instead). The second tooth almost followed the first but he caught it in time just to show Neil in the kitchen and drop it coming down the stairs to show me. We found that one but he was none the less very excited when the tooth fairy visited the next morning and left him 4 shiny new quarters for each tooth lost. I have a great picture of him smiling with no lower teeth :) He now has 4 more teeth in the pre stages of falling out, looks like wonderful Christmas photos are in store for us :)
We started Grade 1 this week and have had many new stories at the supper table. And on top of it, he's too pooped to fight with anyone!!! It has made bedtime all that much quieter.
Ryan is still hitting and temper tantrums but since starting him on Melatonin every night we have yet to see a drop in them and are starting to wonder if they are sleep related at all. Considering I am shorter on patience lately I don't think having 2 kids with big tempers is a really good idea right now.
On the "new" aspect of thing. I have managed to secure a contract for Leigha's Pediasure and thickener through downright obnoxiousness and being quite firm when dealing with our "worker". She has agreed to fund us through the government agency until December 31st where upon we must at that time provide our own private insurance and proof that Leigha has medical requirements for the products requested and that they are "medically neccessary". Now considering the kids doesn't eat much of anything by mouth that doesn't go down in liquid form I'm not sure how we can not prove that this is a neccessary thing. It is getting so bad at meals now that she actually chews the food up and then spits it out again without actually swallowing much of anything " me no like" is the usual comment associated with that...oh so lovely. And it really doesn't matter what I cook, it's always the same with re-constituted food being served back to me by some pigtailed kidlet. Very annoying.
Leigha has also recently begun with the terrible 2's temper tantrums. Very aggravating most days since she seems to think she doesn't need to nap anymore. So not a good thing for someone who would LOVE to nap daily :( I am finding the serenity somewhere and haven't sold her yet to anyone...GOD give me strength.
But we are now almost 1 week with no bottles!! none at nap time (well , when I'd want her to nap) and nothing for bed. So I've only been waking up with her about twice a night this week so far to un-tangle her tube and settle her again. She asks for one everytime but is being told that the bottles are for baby now. I actually had to throw them all out because of the Pediasure smell they all had. I give whole credit to my sister who had the kids over the weekend while I was scrappin, she's the one who actually did it. No battles really this far. One bad start of night (Monday) but with a door cracked open she has settled fine all by herself!
Crap! I'll be back later they threw popcorn all over the toy room!!!
But alas with 3 kids there is no way on God's green earth I can do that. They'd burn my house down around my ears or kill each other. But they are surprisingly resourceful if need be. Ryan is now capable, at the age of 4, to get cereal for himself and turn on the tv, which means I can lie in bed pretending that they aren't all awake and that I have to get up sooner rather than later. The added bonus to that is with Leigha and her feeding tube...she is confined to her bed until I go get her!!! So minimal fighting in the mornings!!!
I have made it to 32 weeks pregnant!! and haven't been up to much really. I went on a scrap retreat the last weekend of August and..( insert yelling from the girls) had contractions all weekend and cankles (made driving home fun :p). They haven't really let up much on both aspects so I have been "confined" to "resting". K so I have 3 other kids, one with medical issues, my doc knows this so the words "try" were very strongly put at my appointment on Tuesday. I just have to make it another 3 weeks and I've made it to the "safer" zone. I am feeling the desire to clean, cook and generally stock up so have had to plan my days so I am not on my feet a lot and have to pay for it, Neil is not good at the foot rub.
I still feel "good" in the happy sense that I can move freely without crying and am not getting embarrased trying to dress myself around the large lump in front. I am at the point where I can't even put on underwear without assistance. And Thank GOD this is "summer" (hahahaha, well not here but..) so I don't really need socks. With Leigha I actually stopped wearing them due to the fact that I could no longer reach my feet without falling over and Neil wouldn't help me without laughing...so not worth it. Considering it was winter for the bulk of the largeness portion of my pregnancy with her, no socks was not a brilliant idea but I worked with what I had.
Nathaniel is growing like a weed, 70Lbs now :o He is huge and eats more than Neil at meals. But again we are entering a growth spurt and have the wussy, cry at the drop of a hat kid on our hands. Karate/Jui Jitsu ( I have no clue what it's called) has helped with the self esteem issues and he asks daily when he's going again or when the next time is. Currently he is down 2 teeth over less than 3 days, courtesy of self managed care :) He wiggled those little things until he swallowed one ( too funny when Neil went to look for it and found not a trace, we think he was so excited that he forgot to spit it out and swallowed it instead). The second tooth almost followed the first but he caught it in time just to show Neil in the kitchen and drop it coming down the stairs to show me. We found that one but he was none the less very excited when the tooth fairy visited the next morning and left him 4 shiny new quarters for each tooth lost. I have a great picture of him smiling with no lower teeth :) He now has 4 more teeth in the pre stages of falling out, looks like wonderful Christmas photos are in store for us :)
We started Grade 1 this week and have had many new stories at the supper table. And on top of it, he's too pooped to fight with anyone!!! It has made bedtime all that much quieter.
Ryan is still hitting and temper tantrums but since starting him on Melatonin every night we have yet to see a drop in them and are starting to wonder if they are sleep related at all. Considering I am shorter on patience lately I don't think having 2 kids with big tempers is a really good idea right now.
On the "new" aspect of thing. I have managed to secure a contract for Leigha's Pediasure and thickener through downright obnoxiousness and being quite firm when dealing with our "worker". She has agreed to fund us through the government agency until December 31st where upon we must at that time provide our own private insurance and proof that Leigha has medical requirements for the products requested and that they are "medically neccessary". Now considering the kids doesn't eat much of anything by mouth that doesn't go down in liquid form I'm not sure how we can not prove that this is a neccessary thing. It is getting so bad at meals now that she actually chews the food up and then spits it out again without actually swallowing much of anything " me no like" is the usual comment associated with that...oh so lovely. And it really doesn't matter what I cook, it's always the same with re-constituted food being served back to me by some pigtailed kidlet. Very annoying.
Leigha has also recently begun with the terrible 2's temper tantrums. Very aggravating most days since she seems to think she doesn't need to nap anymore. So not a good thing for someone who would LOVE to nap daily :( I am finding the serenity somewhere and haven't sold her yet to anyone...GOD give me strength.
But we are now almost 1 week with no bottles!! none at nap time (well , when I'd want her to nap) and nothing for bed. So I've only been waking up with her about twice a night this week so far to un-tangle her tube and settle her again. She asks for one everytime but is being told that the bottles are for baby now. I actually had to throw them all out because of the Pediasure smell they all had. I give whole credit to my sister who had the kids over the weekend while I was scrappin, she's the one who actually did it. No battles really this far. One bad start of night (Monday) but with a door cracked open she has settled fine all by herself!
Crap! I'll be back later they threw popcorn all over the toy room!!!
Thursday, 22 April 2010
A Multitude of Blessings
I'm back!! I know it's been forever but sinc egoing back to work full time last month I admit I am having a horrid time balancing the mom/worker "thing". Having 3 very active kids is trying at times and I am finding the balance harder to maintain of late. It seemed unfortunatly that my haven online fell victim to this chaos that was my focus.
So now I cna fill everyone in on the last 3...4 months or so in a nutshell. I'm keeping it brief (I hope)
1.February saw us in Disney World for 2 weeks. They were fun filled but exhausting. Leigha (as I said previously) astounded us with her excitement over the Princesses it was truly precious. Nathaniel was so in love with the role playing attreactions that we had a hard time pulling him away to do anything else. It was funny to see him trying so hard to be "one of the team" in many of them. I will cherish that memory. Ryan's face when he saw certain characters was one for the photo album. I am so happy that I had 2 cameras shooting photos or I would have missed alot of the real time reactions from being nehind a lens.
2. February/March saw me return to work full time and our first foray into home nanny "ing". Suffice to say it went horrid and we ended up looking for a new child care provider the second week of March after being left in the lurch. We are currently looking for someone towatch the kids out of the house until December and have thus far interviewed many lovely people who take one look at Leigha and run for the hills.
3. March saw me attend my first scrapbooking retreat at Bittern Lake Lodge north of Camrose. I had a wonderful time and relished in the sleeping in, no cooking/cleaning, and great friends. It left me anxious for my next weekend in April :p
4. March/April was also the time we found out we "discovered" ( and I say it in quotes because it was truly not a decision we made), that we are expecting. It seems Disney World is truly the "Happiest Place on Earth" :p . So much to our surprise and eventaul excitement we are going to be welcoming baby #4 into our home this fall sometime. Dates to be announced next week :p
5. April has brought us many new things as well. Leigha had her 2 year check done with our pediatrician and we have been green Lighted to move onto the "next step". We have been referred to the Cleft Lip and Palette clinic int he Stollery hopsital to see a feeding specialist to see if we can't get this little girl to eat more than 2 teaspoons a day. We also have been referred back to our ENT to see "where we go from here". We are truly hoping that this next phase is talking surgery!!!
6. I have spent this last week recovering from illness (not associated with said addition) and have found that despite the feeling like I've been hit by a bus I cna still accomplish an awful lot in a few days. I had the opprotunity to interview a lovely gal for our "caregiver" position and we have about 6 more to go this week. It's amazing what happens when you put "urgent" on an ad :p
7. We are looking into the summer holidays and already like many others I am finding my weekends booking up already. Neil is scheduled for a Basketball camp in Saskatoon this July, Nathaneil is heading east to torornto to see family with my Mother-In-Law leaving me 2 weeks of realitive quiet from the fighting that the boys are doing right now (sometimes there is a draw back to having them so close together in age). 3 reunions, one each month which makes me realise I need to arrange accomodations for 2 of them :p, plus themany weekends booked with friends for visiting since we rarely see each other over the busier months.
8. I have booked another scrapbooking retreat with Giggles & Girlfriends for June 4-6th hoping to accomplish my family herritage album. I have only just realised how much I still have to get done before the reunions in June and July :o I think that will be my only project that weekend, motivation to finnish it ( guess I better get started scanning the rest of the photos :o)
9. I still have to make the phone calls to get price quotes on the backyard re-do. We ar ere-landscaping the yard and since we decided to do it ourselves it seems I'd best find out cost :)
Ina nutshell that is the chaos of the past few months. I am scrambling to find out what I have (or don't) for this new baby. Being a mom of 3 kids doesn't make you anymore prepared for more kids :p Luckily I have all of Leigha's stuff still so if it's a girl I'm set (PLEASE be a GIRL!!!).
I'll be back with baby pics on Monday and hopefully more info on #4 :p
So now I cna fill everyone in on the last 3...4 months or so in a nutshell. I'm keeping it brief (I hope)
1.February saw us in Disney World for 2 weeks. They were fun filled but exhausting. Leigha (as I said previously) astounded us with her excitement over the Princesses it was truly precious. Nathaniel was so in love with the role playing attreactions that we had a hard time pulling him away to do anything else. It was funny to see him trying so hard to be "one of the team" in many of them. I will cherish that memory. Ryan's face when he saw certain characters was one for the photo album. I am so happy that I had 2 cameras shooting photos or I would have missed alot of the real time reactions from being nehind a lens.
2. February/March saw me return to work full time and our first foray into home nanny "ing". Suffice to say it went horrid and we ended up looking for a new child care provider the second week of March after being left in the lurch. We are currently looking for someone towatch the kids out of the house until December and have thus far interviewed many lovely people who take one look at Leigha and run for the hills.
3. March saw me attend my first scrapbooking retreat at Bittern Lake Lodge north of Camrose. I had a wonderful time and relished in the sleeping in, no cooking/cleaning, and great friends. It left me anxious for my next weekend in April :p
4. March/April was also the time we found out we "discovered" ( and I say it in quotes because it was truly not a decision we made), that we are expecting. It seems Disney World is truly the "Happiest Place on Earth" :p . So much to our surprise and eventaul excitement we are going to be welcoming baby #4 into our home this fall sometime. Dates to be announced next week :p
5. April has brought us many new things as well. Leigha had her 2 year check done with our pediatrician and we have been green Lighted to move onto the "next step". We have been referred to the Cleft Lip and Palette clinic int he Stollery hopsital to see a feeding specialist to see if we can't get this little girl to eat more than 2 teaspoons a day. We also have been referred back to our ENT to see "where we go from here". We are truly hoping that this next phase is talking surgery!!!
6. I have spent this last week recovering from illness (not associated with said addition) and have found that despite the feeling like I've been hit by a bus I cna still accomplish an awful lot in a few days. I had the opprotunity to interview a lovely gal for our "caregiver" position and we have about 6 more to go this week. It's amazing what happens when you put "urgent" on an ad :p
7. We are looking into the summer holidays and already like many others I am finding my weekends booking up already. Neil is scheduled for a Basketball camp in Saskatoon this July, Nathaneil is heading east to torornto to see family with my Mother-In-Law leaving me 2 weeks of realitive quiet from the fighting that the boys are doing right now (sometimes there is a draw back to having them so close together in age). 3 reunions, one each month which makes me realise I need to arrange accomodations for 2 of them :p, plus themany weekends booked with friends for visiting since we rarely see each other over the busier months.
8. I have booked another scrapbooking retreat with Giggles & Girlfriends for June 4-6th hoping to accomplish my family herritage album. I have only just realised how much I still have to get done before the reunions in June and July :o I think that will be my only project that weekend, motivation to finnish it ( guess I better get started scanning the rest of the photos :o)
9. I still have to make the phone calls to get price quotes on the backyard re-do. We ar ere-landscaping the yard and since we decided to do it ourselves it seems I'd best find out cost :)
Ina nutshell that is the chaos of the past few months. I am scrambling to find out what I have (or don't) for this new baby. Being a mom of 3 kids doesn't make you anymore prepared for more kids :p Luckily I have all of Leigha's stuff still so if it's a girl I'm set (PLEASE be a GIRL!!!).
I'll be back with baby pics on Monday and hopefully more info on #4 :p
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