A couple of years ago I made friends with a woman, M, that I had met in a support group for children with no foods. We had both been members of the group for a while before we realized that not only were we from the same town, but that we lived right down the street from one another! I remember thinking "Wow! What an incredibly small world!" We are used to being so very out of the ordinary where ever we go and to think all that time a fellow no food kiddo could have been standing in the checkout line next to us at the grocery store.
Her and I arranged to meet up, and chat in order to share our experiences over dinner and vent our frustrations a little. We've been doing this for a couple years I think now and its always a wonderful break. Talking with another mom that has all the same worries and day to day stresses that we do is something neither M or I get to do often.
M's daughter, R, is nearly 7 now and Lucy seems to always end up falling in R's footsteps. I joke with M that our friendship is so one sided since Lucy goes through much of what R does, but a few years behind. I end up learning from all of R and M's journeys and its been incredibly helpful.
R got her g-tube a while back and so the second I knew we would be getting one I made arrangements with M to stop in for a "tubey playdate". Lu played with R and got to see what the actual button and tube would look like, see that R was a perfectly happy, normal girl, and I got to hang out with M and learn all about the technical side of things. I feel 1000 times more reassured having gotten a hands on tutorial from an experienced tube feeding parent.
But what is most reassuring is to see R. She is a happy seemingly normal little girl, chattering endlessly about Zhu Zhu pets, playing with dolls, feeding her pet rabbit, riding scooters on the sidewalk. The fact she is no foods, often sick and in pain, and on a 24 hour a day feeding pump seems of no matter to her. Sure, she certainly has bad days- but when she has good ones they are filled with playdates and happiness, not sulking and crying because her life has so many challenges. On a day to day basis she doesn't dwell on the unfairness, feel sorry for herself, or get angry with everyone else for having food. She just keeps moving forward, enjoying everything she can.
This is the future I hope for Lu.
Wednesday, October 20, 2010
Sunday, October 17, 2010
Zach's Birthday
Yesterday was Big Zach's birthday. Hes......old, okay not really, but hes older than me! He's being forced into celebrating his birthday. Is it like a man thing to say "No really, its no big deal, I am not interested in having fun with my family and friends to celebrate the day."? Seriously. So my sister sat with the kids so we could enjoy one of our 5 date nights a year and then we have some family get togethers planned.
I am definitely a lucky woman. I got to marry my absolute best friend in the world. There really is no one that he or I would rather spend all our time with. And I know every couple says that, blah blah blah, but it really is true. We always joke that we could never get divorced and remarried because we'd still want to hang out all the time and there's no way our new spouses would ever put up with that. We've had our ups and downs in our marriage, been through some real tough times that many marriages end over, but at the end of the day we are always best friends and that is the glue that holds us together when life refuses to cut us a break.
I am lucky enough to have a guy that can make me laugh til I pee my pants (yep, and then he laughed at me til he almost wet HIS pants) and then hold me in comfort when life seems unbearable. For every area it feels like we've been short changed in the luck department, its been made up for in having my hubby.
Happy Birthday, Babe!
* and for the record, the peeing in the pants thing is not a regular thing. Its only happened once.... and I was pregnant.
I am definitely a lucky woman. I got to marry my absolute best friend in the world. There really is no one that he or I would rather spend all our time with. And I know every couple says that, blah blah blah, but it really is true. We always joke that we could never get divorced and remarried because we'd still want to hang out all the time and there's no way our new spouses would ever put up with that. We've had our ups and downs in our marriage, been through some real tough times that many marriages end over, but at the end of the day we are always best friends and that is the glue that holds us together when life refuses to cut us a break.
I am lucky enough to have a guy that can make me laugh til I pee my pants (yep, and then he laughed at me til he almost wet HIS pants) and then hold me in comfort when life seems unbearable. For every area it feels like we've been short changed in the luck department, its been made up for in having my hubby.
Happy Birthday, Babe!
* and for the record, the peeing in the pants thing is not a regular thing. Its only happened once.... and I was pregnant.
Wednesday, October 13, 2010
Apple Picking
We took the kids apple picking yesterday and collected enough apples to make a ton of homemade apple sauce. I have no idea what we will do with a ton of apple sauce, but hey its from scratch and now the house smells good! Zachary was careful to only select the best of the best, while Lucy went for sheer volume. Its the first time we've ever been and it was a lot of fun!
Monday, October 11, 2010
Tubey Time!
Major changes are up ahead for Lucy and I thought it was about time I posted an update. Lucy could certainly use all the thoughts and prayers you can offer.
We've spent the last year going back and forth between Lucy's various doctors trying to determine if its the right time to put in a feeding tube. Her weight has gone up and down and up and down, and then we've seen it stabilize. Her stomach just can't tolerate a large volume of formula which makes it difficult to get in the 40 +/- ounces a day that she technically should be getting. But at any rate, in the spring it seemed that Lucy had settled into her "new" growth curve and that, though her formula intake was low, it was just enough to keep her growing and going.
However, as the summer went on Lucy really started showing some signs of struggle. She was slowing down, having a hard time keeping up with the pace of other children her age, unable to tolerate the summer heat, complaining of headaches, and waking in the middle of the night screaming about leg pain. Shes pale, anemic, and has dark circles around her eyes.
Our GI specialist was concerned that these are all red flags for a Mitochondrial Disease and sent us on to a Geneticist. The Geneticist was appalled that Lucy did not yet have a feeding tube and was sustaining weight on such a small amount of formula. She felt that the bulk of Lucy's "mito-like" issues were really due to the fact her body just wasn't getting enough nourishment. She adamantly recommended that we immediately get a tube. She was so insistant about it that she even paged our GI on the spot.
So its off to the OR for a feeding tube we will go! The tube will go directly to Lucy's stomach and enable us to pump formula into her belly all night long at a nice slow rate. This will keep Lucy comfortable, hydrated, and give her all the calories she needs. At this point, its a relief. I spend my day constantly keeping track of how much she's had, when she can eat again, and trying to make sure shes getting as much as she can without over doing it. Our day quickly becomes ALL about the formula. And that is not a good quality of life, that's not a healthy normalcy.
Of course, I am scared for her and I am devastated she will be in pain for some time after the surgery. Its a pretty major surgery that will change her life. We have done our best to remain tube free, holding out hope that she would one day get food. Looking at the long term, however, its what is best for Lu. There is no projection Lucy will even trial foods within the next year or two, which leaves us stuck with a formula-only diet for some time. The decision to get a tube doesn't come easy at all but I want to see Lucy healthy, happy, and thriving, despite the formula diet, and a tube is the only way to accomplish it at this point.
Surgery is set for Oct 28th and we will remain inpatient for a few days post op. I will post updates as much as I can!
Thank you for checking in on Lu!
We've spent the last year going back and forth between Lucy's various doctors trying to determine if its the right time to put in a feeding tube. Her weight has gone up and down and up and down, and then we've seen it stabilize. Her stomach just can't tolerate a large volume of formula which makes it difficult to get in the 40 +/- ounces a day that she technically should be getting. But at any rate, in the spring it seemed that Lucy had settled into her "new" growth curve and that, though her formula intake was low, it was just enough to keep her growing and going.
However, as the summer went on Lucy really started showing some signs of struggle. She was slowing down, having a hard time keeping up with the pace of other children her age, unable to tolerate the summer heat, complaining of headaches, and waking in the middle of the night screaming about leg pain. Shes pale, anemic, and has dark circles around her eyes.
Our GI specialist was concerned that these are all red flags for a Mitochondrial Disease and sent us on to a Geneticist. The Geneticist was appalled that Lucy did not yet have a feeding tube and was sustaining weight on such a small amount of formula. She felt that the bulk of Lucy's "mito-like" issues were really due to the fact her body just wasn't getting enough nourishment. She adamantly recommended that we immediately get a tube. She was so insistant about it that she even paged our GI on the spot.
So its off to the OR for a feeding tube we will go! The tube will go directly to Lucy's stomach and enable us to pump formula into her belly all night long at a nice slow rate. This will keep Lucy comfortable, hydrated, and give her all the calories she needs. At this point, its a relief. I spend my day constantly keeping track of how much she's had, when she can eat again, and trying to make sure shes getting as much as she can without over doing it. Our day quickly becomes ALL about the formula. And that is not a good quality of life, that's not a healthy normalcy.
Of course, I am scared for her and I am devastated she will be in pain for some time after the surgery. Its a pretty major surgery that will change her life. We have done our best to remain tube free, holding out hope that she would one day get food. Looking at the long term, however, its what is best for Lu. There is no projection Lucy will even trial foods within the next year or two, which leaves us stuck with a formula-only diet for some time. The decision to get a tube doesn't come easy at all but I want to see Lucy healthy, happy, and thriving, despite the formula diet, and a tube is the only way to accomplish it at this point.
Surgery is set for Oct 28th and we will remain inpatient for a few days post op. I will post updates as much as I can!
Thank you for checking in on Lu!
Monday, April 12, 2010
Oh, hey there!
Oh yeaaaah, there is this blog of mine!
No, I didn't forget about my blog. I just haven't felt compelled to write much....and additionally I am trying to figure out what to do about my photo situation. So I come back to my blog, tail between my legs, totally photo-less. Right now my digital chip has about 500 photos on it(literally) and I am concerned about loading that many onto my laptop. So what I need to do is to get the chip developed, THEN take new pictures of the house and load them here.
Things at the new house are going well. For the first time in a very long long time the focus of our lives is not on money or health crises, but rather on mundane stuff like hosting dinners, trips to the park, and visiting family. Its been an awesome change. We are all settled in and it already feels like home here.
We continue to make repairs and upgrades in the house. Our main focus has been the backyard at the moment. When we got here there was a circle in the center of the yard where the pool used to be that was full of exotic weeds as tall as the kids. There was also a side garden that stretched about 12 feet x 4 feet that was a mixture of garbage, weeds, and miscellaneous junk. We ended up renting a dumpster that we completely filled with yard debris and trash, much to our neighbors' delight. We put down topsoil and then planted grass, which is finally beginning to sprout- its the most gorgeous grass I have ever seen and I cant wait for the kids to be able to run across it!
On the health front everyone is doing acceptably.
With the recent heat wave, Lucy's skin flared quite a bit but has already settled back down again. It reminded me that I needed to be mindful of my clothing selections for her summer wardrobe(materials need to be soft with no rough edges and somewhat loose so that they do not rub, and shoes are a whole other huge problem in themselves). Oh and potty training has come to a screeching halt. I am pretty sure this child will go to college pooping in her pants.
Zachary is very happy in the new house. We recently joined a new social group for children on the spectrum and he enjoys that a LOT. His stomach has been giving him big problems again. I am hopeful that the problems are from him possibly getting one of his allergens accidentally, but I cant be sure this is the case. I am worried that this is a new chronic problem and that he will have to see Lucy's GI in order to get better treatment. An appointment with Lucy's GI would involve a lot of tests and further diet restrictions so I have hesitated in the hopes his stomach will work things out.
We discovered the dog is gluten/casein intolerant. She fits in like a glove with this family doesn't she? So now she eats a super awesomely expensive dog food but the good news is that she has put on some weight and that she no longer stinks us out of the room with a serious case of flatulence. I just find it remarkable a dog with food allergies would find its way to our family!
So there you have it. A pretty general update. I am going to work on the photo situation. I have Easter pics of my gorgeous and perfectly coordinated children to share as well.
Thanks for checking in on us!
No, I didn't forget about my blog. I just haven't felt compelled to write much....and additionally I am trying to figure out what to do about my photo situation. So I come back to my blog, tail between my legs, totally photo-less. Right now my digital chip has about 500 photos on it(literally) and I am concerned about loading that many onto my laptop. So what I need to do is to get the chip developed, THEN take new pictures of the house and load them here.
Things at the new house are going well. For the first time in a very long long time the focus of our lives is not on money or health crises, but rather on mundane stuff like hosting dinners, trips to the park, and visiting family. Its been an awesome change. We are all settled in and it already feels like home here.
We continue to make repairs and upgrades in the house. Our main focus has been the backyard at the moment. When we got here there was a circle in the center of the yard where the pool used to be that was full of exotic weeds as tall as the kids. There was also a side garden that stretched about 12 feet x 4 feet that was a mixture of garbage, weeds, and miscellaneous junk. We ended up renting a dumpster that we completely filled with yard debris and trash, much to our neighbors' delight. We put down topsoil and then planted grass, which is finally beginning to sprout- its the most gorgeous grass I have ever seen and I cant wait for the kids to be able to run across it!
On the health front everyone is doing acceptably.
With the recent heat wave, Lucy's skin flared quite a bit but has already settled back down again. It reminded me that I needed to be mindful of my clothing selections for her summer wardrobe(materials need to be soft with no rough edges and somewhat loose so that they do not rub, and shoes are a whole other huge problem in themselves). Oh and potty training has come to a screeching halt. I am pretty sure this child will go to college pooping in her pants.
Zachary is very happy in the new house. We recently joined a new social group for children on the spectrum and he enjoys that a LOT. His stomach has been giving him big problems again. I am hopeful that the problems are from him possibly getting one of his allergens accidentally, but I cant be sure this is the case. I am worried that this is a new chronic problem and that he will have to see Lucy's GI in order to get better treatment. An appointment with Lucy's GI would involve a lot of tests and further diet restrictions so I have hesitated in the hopes his stomach will work things out.
We discovered the dog is gluten/casein intolerant. She fits in like a glove with this family doesn't she? So now she eats a super awesomely expensive dog food but the good news is that she has put on some weight and that she no longer stinks us out of the room with a serious case of flatulence. I just find it remarkable a dog with food allergies would find its way to our family!
So there you have it. A pretty general update. I am going to work on the photo situation. I have Easter pics of my gorgeous and perfectly coordinated children to share as well.
Thanks for checking in on us!
Thursday, March 4, 2010
hooray!
We made it, settlement is over! We closed on the house last night and although it was a tremendous relief, it was bittersweet.
We love that house and really wanted to have a positive experience with our buyer, but our buyer turned out to be someone with .....um....some neurotic issues. We started out the process being very flexible, offering up her some free furniture and my husband's sports fathead in the rec room. We gave her access to our house 4 separate times to show her family and friends, simply because we wanted to be generous. We would have wanted someone to treat us that way and we were pleased that our buyer seemed so very excited about the house- after all, we were when we first bought it nearly 5 years ago.
But after the home inspection things went downhill. She became pretty unreasonable (wanting to ask us to fix absurd cosmetic details that were barely noticeable even when her inspection was supposed to be for "informational purposes only" as she had agreed to). She had a horrible home inspector that was about as flaky as a pie crust to top things off and complicate things further. At that point I felt like a pirate was attempting a hostile takeover of my beloved home and it started to become an excruciating process trying to get things ready before closing.
All in all it was a miserable experience that I didn't handle well. I would love to say that after all this I learned to shine in a time of crisis, but I didn't. I completely lost my mind from about October until, well, this morning. As of today we officially start a new chapter in our life and I am excited about moving on.
Now, off to nag my husband to put up my curtain tie backs and pictures so that I can get some photos!
We love that house and really wanted to have a positive experience with our buyer, but our buyer turned out to be someone with .....um....some neurotic issues. We started out the process being very flexible, offering up her some free furniture and my husband's sports fathead in the rec room. We gave her access to our house 4 separate times to show her family and friends, simply because we wanted to be generous. We would have wanted someone to treat us that way and we were pleased that our buyer seemed so very excited about the house- after all, we were when we first bought it nearly 5 years ago.
But after the home inspection things went downhill. She became pretty unreasonable (wanting to ask us to fix absurd cosmetic details that were barely noticeable even when her inspection was supposed to be for "informational purposes only" as she had agreed to). She had a horrible home inspector that was about as flaky as a pie crust to top things off and complicate things further. At that point I felt like a pirate was attempting a hostile takeover of my beloved home and it started to become an excruciating process trying to get things ready before closing.
All in all it was a miserable experience that I didn't handle well. I would love to say that after all this I learned to shine in a time of crisis, but I didn't. I completely lost my mind from about October until, well, this morning. As of today we officially start a new chapter in our life and I am excited about moving on.
Now, off to nag my husband to put up my curtain tie backs and pictures so that I can get some photos!
Saturday, February 27, 2010
Patience dear friends
Pictures are coming! I swear it there are! Settlement on the old house got bumped up to this Wednesday so we have been busy trying to empty out that house and do any fix its needed (which basically means my picture hanging, curtain rod installing handyman/Big Zach is busy).
In other news I decided to take the plunge and start potty training Lu....finally. I have to tell you she looks sooooo cute in her little underpants. So far its going alright. The first day was easy peasy, not one accident. Day two brought 3 accidents and so far today shes done well but then again its only around 8 am. Lucy is a stubborn control freak so I am trying to be very relaxed and not push her because the whole project will end up down the drain if she senses I WANT her to use the potty so badly.
In my last post I forgot to share the extra good news and that is that Lucy has gained weight back up to 27lbs and is holding there. I decided to buy a medical scale to keep here at the house because the cost of the scale was less than what it was going to cost me in copays at the peds office to have her weighed every 2 weeks. Now I can just do it whenever I want!
Thanks for checking in on us!
In other news I decided to take the plunge and start potty training Lu....finally. I have to tell you she looks sooooo cute in her little underpants. So far its going alright. The first day was easy peasy, not one accident. Day two brought 3 accidents and so far today shes done well but then again its only around 8 am. Lucy is a stubborn control freak so I am trying to be very relaxed and not push her because the whole project will end up down the drain if she senses I WANT her to use the potty so badly.
In my last post I forgot to share the extra good news and that is that Lucy has gained weight back up to 27lbs and is holding there. I decided to buy a medical scale to keep here at the house because the cost of the scale was less than what it was going to cost me in copays at the peds office to have her weighed every 2 weeks. Now I can just do it whenever I want!
Thanks for checking in on us!
Wednesday, February 24, 2010
Moved in
We are all moved in! We are settling into our new routine and trying to organize our new space. Moving is definitely not fun but it has been well worth it because the new house is beautiful. We have just a few more pictures to hang and items to put away before I take some photos to share.
Lucy is doing quite well. Our first night here it was not looking optimistic that she would willingly sleep in her new big girl bed. We had let her pick out her own bedding and put her old crib blanket on top of the bed thinking that she would feel excited about the transition, but she wasn't buying it. She cried and begged for us to take her home to her crib. I was concerned that it was going to be a long night. Surprisingly though, she slept right through the night in her bed! A very pleasant surprise.
Zachary, of course, loves his new room. Hes my easy going guy and just settles into where ever we are. He is enjoying the change(and the week break from homeschool I gave him so we can get unpacked).
Big Zach is enjoying his reduced commute time- down to just 10-15 mins from 45 mins at our old house.
And me? I LOVE my new kitchen. More cabinets than I can fill and loads of counter space overlooking the living room so I can watch the kids. What more can a mom ask for??
Pictures will come soon!
Lucy is doing quite well. Our first night here it was not looking optimistic that she would willingly sleep in her new big girl bed. We had let her pick out her own bedding and put her old crib blanket on top of the bed thinking that she would feel excited about the transition, but she wasn't buying it. She cried and begged for us to take her home to her crib. I was concerned that it was going to be a long night. Surprisingly though, she slept right through the night in her bed! A very pleasant surprise.
Zachary, of course, loves his new room. Hes my easy going guy and just settles into where ever we are. He is enjoying the change(and the week break from homeschool I gave him so we can get unpacked).
Big Zach is enjoying his reduced commute time- down to just 10-15 mins from 45 mins at our old house.
And me? I LOVE my new kitchen. More cabinets than I can fill and loads of counter space overlooking the living room so I can watch the kids. What more can a mom ask for??
Pictures will come soon!
Sunday, February 21, 2010
Monday, February 15, 2010
Boy it has REALLY been a while.
Holy Geez! Where have I been? I cant believe its already February.
We have been so wrapped up in selling this house and prepping the new one that I just haven't given a moment to sitting down and writing in this blog. That's sad, because it really speaks volumes for how poorly I have handled all this stress. I would like to say that I endured this process with faith and trust that it was in God's hands and that He would see us through but unfortunately I have struggled every minute of everyday with all the uncertainty that clouds anything having to do with real estate.
We are nearing the finish line though and hopefully it will be a matter of days before our stressors have been greatly reduced.
So to catch everyone up to speed in an orderly fashion, a bulleted list:
We have been so wrapped up in selling this house and prepping the new one that I just haven't given a moment to sitting down and writing in this blog. That's sad, because it really speaks volumes for how poorly I have handled all this stress. I would like to say that I endured this process with faith and trust that it was in God's hands and that He would see us through but unfortunately I have struggled every minute of everyday with all the uncertainty that clouds anything having to do with real estate.
We are nearing the finish line though and hopefully it will be a matter of days before our stressors have been greatly reduced.
So to catch everyone up to speed in an orderly fashion, a bulleted list:
- Our house is under contract for the exact amount we needed, no more no less, and its WONDERFUL
- Our home inspection is Wednesday and you will find me huddled in a corner in the fetal position until then
- Bill, my father in law, surprised us by putting in new floors for our new house which brought all the work we did full circle so that the place truly looks done up
- We are setting up to move this weekend- rain, sleet, SNOW or shine
- Lucy renamed the dog Houndzo and shes actually responding to it
- We are scheduled to close on our current house sometime in the first weeks of March
- Once we are moved and unpacked I will post up pictures, I know that especially the family is eager to see how far we have come with the house
So there you have it. Now everyone is on the same page and all caught up! I am eager to get back to regularly blogging once we are moved in and no longer hopping between two houses! Thanks so much for checking in on us. More updates to come!
Subscribe to:
Posts (Atom)
