On a Lighter Note February 27, 2010
Lest you think I’m all about the heavy posts these days, let me present this scene which occurred earlier this week in our house.
Me: “Adam, what are you doing?”
Adam: “Rinsing toothbrushes in the potty.”
I Can See! February 1, 2010
I remember what it felt like to get glasses. I was in 6th grade, and I’ll never forget walking through the mall seeing everything clearly for the first time.
Adam got glasses a week and a half ago, and he’s been experiencing the same thing. I was a little worried that he’d have trouble getting used to them, but he’s done great, no doubt due to the fact that he can actually see now.
Adam’s been followed by a pediatric ophthalmologist for a while now, first due to his nystagmus (shimmering of the eyes back and forth) and currently due to strabismus (eye wandering outwards.) Along the way, his vision has been checked, too.
The last time he was dilated back in June, he was nearsighted but not so much that the doctor felt that it required correction. We went back a few weeks ago, and his vision had worsened to -3.00 in one eye and -3.50 in the other. We had noticed that he had been having trouble seeing, so the decision to put him in glasses was an easy one.
They’ve already helped so much, and I have to say that he looks quite cute in them, don’t ya think?
His nystagmus is undetectable to the naked eye now, only under magnification can the doctor see it, so that’s good news. There’s hope that the glasses will help the strabismus, but if not there’s talk of patching. We go back in two months to see how he’s doing.
I’m just so glad my little man can see well now. I know I’d be lost without my glasses and contacts. I think he’s already starting to feel the same way. He even asks for them when he wakes up in the morning and after nap. It’s great that they’ve made such a difference for him. So, yay for glasses!
Three January 14, 2010
Adam turned 3 this past weekend. I can hardly believe it. I mean, really. How did that happen?
I guess it’s still hard for me to believe sometimes that we really got this lucky. I never ever expected our final FET cycle to work. Why should that one succeed when all of the others had failed? I guess it was because we were waiting for Adam. And as I’ve said before, he was definitely worth the wait.
He’s such an amazing little guy (who isn’t quite so little anymore.) The boy is tall! He fascinates me on a daily basis. The other day he woke up and the first thing out of his mouth was “subtracting!” He proceed to ask for his number book was so we could do some subtracting. That’s my Adam.
In addition to all things number related, he loves all things building related. You could not pry away his tool toys from him if you wanted to. He got a new work bench for his birthday, and he loves it. He loves to take stuff apart, too. The other day it took me quite a while to get my Dyson back together, he had it in so many pieces.
He loves to play outside, and I’m sure he can’t wait for the weather to warm up some so he can spend more time out there. We go on walks to the playground, and he insists on taking the long way home through the neighborhood. He likes collecting pine cones, leaves, and knocked off street reflectors along the way. And we have to stop at every mailbox we pass, too. Our neighborhood has grouped mailboxes, and he loves to open the package spots, count the boxes, etc.
Adam has crazy hair. It’s blond, straight, and fine like mine, but his has a tendency to stick straight up in the back. Sometimes it behaves, but other times it is so out of control that’s it’s pointless to even bring a comb or brush into the same room. On those days we even get strangers commenting about it.
He’s got a kind heart. I love that about him. He loves to give other kids hugs and is best buddies with our two cats.
And he’s funny, too. He loves to tell jokes. His favorite one is that he has three feet. He thinks that’s hilarious. He does things that crack me up. He recently learned to headbutt. He’ll bump his head into your butt at random moments and declare “headbutt!” But sometimes he gets it backwards and it comes out “butthead!”
He’s more than I could have ever asked for. I still remember what it felt like to hold him in my arms that first night in the hospital. Now I get big hugs. What could be better?
Diapers, Diapers, Diapers December 6, 2009
Several months ago Adam decided that he wanted a new potty, one that sang songs at that. Now, we’ve had a little potty and a potty seat in the house for a long time, but he had never really shown any interest in them. And I wasn’t going to push it.
When Adam showed interest in his singing potty we decided to go with it. We brought out the sticker charts, prizes, and all that good stuff. He did pretty well, and he even progressed to wearing cotton trainers for a bit. Then the novelty wore off, and he wanted nothing more to do with that singing potty, underwear, or anything remotely associated with either.
Again, I wasn’t going to push him. It’s not like forcing him was going to do a darn bit of good. So, back to diapers we went.
One thing I found that I really liked about his brief stint out of his disposable diapers was having real fabric next to his sensitive skin. So, I decided to make the late switch to cloth diapers. It didn’t seem like Adam was going to really potty train anytime in the near future given his renewed lack of willingness as well as all of the issues that come along with having an extremely sensitive digestive tract, so I thought I’d give cloth a try.
Unfortunately, the combination of our half-ass washing front loader and Adam’s sensitivity to chemicals (ie. laundry detergent) didn’t make for a good combo when it came to cloth, (and yes, I’ve tried multiple types of detergent, different wash combos, etc. to no avail).
I did learn that I really do like cloth diapering. Who knew. I really loved reading reviews of different diapers when I started out, so I thought I’d post my humble opinions on the ones we tried. At least maybe someone can get some info out of the money I spent on this short lived endeavor.
All of the diapers I tried first used microfiber in some shape or another. They were all pocket diapers or all in ones (AIOs) and they all had snaps for closures.
Swaddlebees AIOs: These were the first diapers we tried. They have a trim fit through the crotch and fit Adam so well. I really liked the snap placement on these. They take a while to dry due to their AIO nature, but it helps if you flip them inside out before tossing them in the dryer.
FuzziBunz One Size: I really liked this diaper. Is has an internal elastic adjustment system (as opposed to snaps down the front) which I found nice. It’s not a diaper that would have fit Adam long, though. He was on the last button holes for the rise.
FuzziBunz Pefect Size: We got the medium long size, and it worked well on Adam. It has the length of a large and width of a medium which was good given that Adam is tall but not thick. Both the Fuzzi Bunz have a microfiber insert that you place into the pocket which result in a faster drying time than an AIO diaper.
Knickernappies One Size and 2G (sized): I liked these diapers ok but couldn’t get as good as a fit on Adam with them. The only difference between the one size and 2G besides the ability to adjust the rise down is that the 2G’s have elastic on the front waist area and the one size do not. I got both of the diapers with the Knickernappies Loopy Do inserts which contain both microfiber and hemp. Those are super duper absorbent inserts.
I found that I didn’t really like the diapers with microfiber. As I mentioned, my front loader was not doing a good job of getting the diapers clean or rinsed, and the microfiber compounded the issue. So, I decided to give diapers with all natural fibers a try.
bumGenius Flip: This is a system with a separate cover and insert. I got the organic cotton insert. The insert is awesome, very soft and extremely absorbent. I didn’t love the fit of the cover on Adam, though. He always ended up with bad snap marks.
GroBaby: This looks like it could be a nice system with it’s organic cotton snap in insert and accompanying cover, but we never really got to test it out because it was just too tight on Adam.
Bottombumpers All in One: This was by far my favorite of the ones we tried. It’s made with cotton and bamboo, and is so soft. They have snap in inserts, so they dry as quickly as pocket diapers. I got the ones with hook and loop closures, and I loved them. I always had a hard time getting a perfect fit with snapping diapers, and this solved the problem.
We also tried cotton prefolds, but I didn’t love the bulk.
There were a few miscellaneous things we tried, too.
bumGenius Flip disposable inserts: I got these to try with the Flip cover. These were the worst thing we tried. The inserts are extremely narrow and tend to shift and bunch inside the cover while being worn. This always resulted in an extremely soiled cover whenever poop was involved. Plus, Adam reacted to the inserts themselves. I’m assuming it was to the starch based glue they use in them.
Grobaby Bio Soaker disposable inserts: These are great. They have gusseted sides which hold in the contents, so no soiled cover problems like with the Flip disposable inserts. They are pricey, but I got them during the buy one get one free sale which I believe is still going on. The one thing I don’t like about them is the adhesive on each end. They probably work ok with the Grobaby cover, but since we couldn’t use that one I used them in other covers. The adhesive sticks like crazy, and my other covers don’t like that at all.
Thirsties Duo Cover: I’ve used this cover with both the Flip organic insert and Grobaby Bio Soaker disposable inserts, and they both work well (other than the adhesive issue previously mentioned.) This cover is fantastic, and I love the fit I can get with the hook and look closure.
I also tried a couple of new brands of disposables. Adam’s been in Huggies since the beginning, but the idea of have a diaper with fewer chemicals, etc, appealed to me. We tried both Seventh Generation and Whole Foods 365 diapers, but I didn’t like either of them. The inside of the Seventh Generation ones bunched up really badly on Adam, and the 365 ones didn’t fit him well. We even got leaks with those which is not something we’re used to with disposables. In case anyone is comparing, the Seventh Generation run much smaller than the 365. It seems that Huggies runs in the middle of the two size wise.
As much as I would have loved to have gone with the Bottombumpers full time, it’s not happening. So, we’ve been using the Grobaby Bio Soakers in the Thirsties Duo cover as well as Huggies Pull Ups. Now I’ve got to figure out what to do with my stash of cloth.
What’s funny is that after devoting all of this money and energy to the perfect diaper pursuit Adam decided this past week that he needed me to buy him some new underwear. He’s been wearing them off and on the past couple of days. I wonder if it will stick this time.
How’s the Little Man? November 20, 2009
I know several people have asked how Adam is doing. He’s great.
I am finding it absolutely amazing to watch him learn and grow. He surprises me all the time. A couple of weeks ago we learned that he knows his numbers 1-10 in Spanish. It’s not something we sat down and practiced. He just picked it up.
He does stuff like that a lot. Tonight he counted backwards from 10 (in English). Who knew. His brain is just a sponge.
Adam loves to explore. He loves to figure out how stuff works. I call him my little engineer. He does stuff like taking apart the vacuum cleaner and then putting it back together. His brain is so cool.
It’s been fun to watch his personality develop. When we started going to music classes a year and a half ago, he was the shy toddler who preferred to sit away from the group. Now he’s the one who gives all of the kids in class “sneak attack” hugs. He really is a total sweetheart.
He love animals, too. He loves his two kitties, and he loves seeing the neighborhood dogs out for walks. “Puppies!” He’ll pet anything that lets him.
He has limitless energy and wears me out on a daily basis. I swear, just attempting to go on a shopping trip is a challenge. “Adam, please close the door to the freezer case.” “Adam please put that down and come this way.” If there’s a knob, he needs to turn it. If there’s a door, he needs to open it. It’s good, though. I mean, aside from the frustration of not being able to buy more than five things at a time.
Things have calmed down on the medical front which is always good. The fluid in his ears is gone, so no more talk of tubes and no more visits to the ENT unless he develops a separate problem. He finished with speech therapy many months ago, and has caught up tremendously. He has a wonderful vocabulary now, speaks in sentences, and all that good stuff.
The food stuff is still an issue, but his diet has continued to expand and he is growing like an absolute weed. The kid is tall, something he does not get from me. He’s still on Neocate Jr. to make sure he’s got all nutritional bases covered, and I think we’re all fine with that at this point.
So yeah, he’s good. Every single day Adam will just come up to me out of the blue and say “Hi Mama” and give me the biggest hug ever. It doesn’t get better than that.
The End? A New Beginning? You Got Me. October 8, 2009
Sometimes I wonder if I should just shut this thing down. Should I delete it? Leave it up? What? And then I read a post like this, a post that resonates with me, and I finally come back to type.
I don’t know where to pick up really. It’s been too long. But I’ll try.
We just took a trip to spend a long weekend with my brother, sister-in-law, and their daughter, Adam’s only cousin. Every time I’m with them I feel the ping. Their daughter is 11 months old. It’s the ping of watching a little one, watching Adam interact with a little one. The ping of knowing that it’s the road not taken for us.
Before the ugly infertility monster decided to take a few good swings at us, we’d always thought we’d have 2 or 3 kids. Well, that was the fantasy. We all know how the reality turned out. 7 IVF/FET cycles=1 live birth.
That path led us to Adam, though. So, despite the ping, I’m ok with it. It’s been a process to become truly ok with it. But I think I’m there.
I see siblings playing together. I see pregnant bellies at all of our toddler activity classes. I know what’s it’s like to be able to have a sibling as an adult. But they don’t scream as loudly to me now. Oh yes, they still whisper, but they don’t scream.
It wasn’t an instantaneous process to accept that Dan has azoospermia and that our only hope of conceiving a child would be through IVF. It most certainly wasn’t an instantaneous process to accept that even if we signed check after check and I shot up drug after drug that we may or may not get a real live baby out of the deal. So, it’s not surprising that accepting that our family may not have turned out as I originally pictured has taken (is taking) some time.
Like I said, I think I’m mostly there. I know we’re a family of three. Period. And while I’ve never made an official proclamation before, our infertility journey has been over for quite some time.
So, where do I go from here? Am I going to try to figure my way through parenting via this blog? Am I going to neglect it as badly as I’ve done in the recent past? Your guess is as good as mine.
Writing about infertility was more urgent, and more interesting, too, I’m sure. I don’t have the same kind of pain or struggle now. It makes for a more pleasant life but a more boring blog.
Hmm, I wonder what the heck I’m going to do with this thing?
Only In the Computer June 22, 2009
Well, I didn’t mean to leave my blog on that downer note for so long. Things are looking up. Yes, it’s going to take some time to get over all that happened, but we’re ok. That’s what’s important.
So, on a lighter note, I’ve been living out my Fertile Myrtle fantasies with the Sims 3 game these days. I made my Sim’s lifetime wish to raise 5 children. Funny, huh? I even used some of my reward points to purchase a pass to the fertility clinic. Even funnier! My chick already has 3 toddlers and is pregnant again. Like I said, only in the computer.
It kind of makes me think, though. You know, about all of that fertility (or in- as the case may be) stuff. I think I’ve moved passed it as much as is possible for now. And I think that’s a good thing.
I’ll never forget, but I’m healing. You can’t go through that crap without it changing you, but it feels like a whole other life. Adam is my present. He’s just too full of life to waste energy thinking about the past.
So, what about the future? Well, we know I won’t be following in the footsteps of my Fertile Myrtle Sim. That’s a given.
I really think it’s going to be “just” Adam. There’s no “just” about him, but you know what I mean. Dan and I have already decided that we won’t be setting foot back in an IVF clinic again. It was worth every second of it to get Adam, and I’d do all of it all over again in a heartbeat, but I don’t think either of us has it in us to go through another 7 cycles. And while adoption has been discussed on and off, this whole ©ps thing throws a huge wrench into that.
The truth is, though, that even if we could be fertile myrtles, I don’t know that we would. I know that Dan and I both wanted a child so badly that we would jump through a million hoops to make it happen. Now that we’ve done our hoop jumping and have our precious one, well, I think it’s enough. He’s more than enough, actually. More than.
So, I think I’ll save my Fertile Myrtle fantasies for the computer. That’s where they belong.
Feeling Stuck June 9, 2009
I’m torn between stuffing everything in a box and moving along and just letting it all out. I wish I could say that I’ve just been able to let it all go after we read the words “cased closed.” It’s not that easy, though.
It’s hard to hear that someone thinks you’re a bad mother when you know that you’ve done everything possible to insure the opposite. It’s hard to just get over having to prove that you’re a fit enough parent to have your child live with you.
I know in my heart that we have always done what’s best for Adam. I know that we know him better than anyone else. I know I’m a good mom for him. I just wish I could just get past everything that happened. I know I can’t wish it away, though. It’s going to take time to heal. We have been scarred from this. It’s just how it is.
I’m still trying to wrap my head around how all of this happened. How someone could fail us so much when we were just trying to get help.
So many things don’t add up to me. Why didn’t they talk to Adam’s local doctors who knew him and us? Why didn’t they take into account that Adam and I were both grieving for the abrupt end to breastfeeding (just 4 days before our trip) instead of assuming that Adam was developmentally delayed and I was emotionally unstable? Why didn’t they take into consideration the fact that Adam had lost significant weight from the illness that landed us both in the ER just days prior to our trip instead of assuming that he was malnourished?
Like I said, I don’t get it. Adam is thriving. He’s in the 50th percentile for weight and 75th percentile for height. His only developmental delay has been his speech, and I can’t even begin to describe the progress he’s made in the last few months. He’s catching up fast. He’s a healthy, happy little boy.
I wish I could put the hell we went out of my mind. I know the system is there for a reason, but I’ve also read numerous cases of falsely accused parents who have to jump through hoops to get their cases closed. They came right out and told us that we were guilty until we proved ourselves innocent, and that was the truth. I don’t blame them, though. They were only listening to the reports they got. They should have never gotten them in the first place.
I need to just focus on the fact that Adam is doing better now, and that’s the most important thing. He’s gaining foods. He’s growing like a weed. He’s my little miracle man, and I’d go through this hell all over again if I had to for him. He’s more than worth it.
We Interrupt This Blog Silence May 29, 2009
Wow, even I’m surprised at how long of a break I took from the blog this time. I really did want to blog but couldn’t talk about all that was going on. It killed me to not be able to blog when I really needed to, and I couldn’t put that stuff out of my head long enough to post about anything else.
So, here’s a little catching up. Since I last posted:
My blog turned 5 years old.
I turned 32.
Dan and I celebrated our 11th wedding anniversary.
Adam learned how to count to 10 and spell his name. (So cute!)
And last, but certainly not least, the case was closed.
Yes, no more investigation nightmare, and relief doesn’t even begin to describe it. I wish I could describe the hell that we went through, but there just aren’t adequate words. It’s over now, thankfully, and we can move forward.
So, hopefully I’ll get myself back in gear and start posting again soon.
A Little Q, a Little A April 4, 2009
I know several of you have asked various questions in my comments section, so here goes.
Sharon asked:
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“When you do your food trials-how long do you have to wait between foods? Can we get a picture of your little guy?”
When Adam was still nursing we actually did week long trials, but now that he’s at a good baseline and there are no complicating factors like worrying about what I’m eating, we’re actually trialing more quickly. We usually do three days of a new food before moving on unless there’s a question about whether or not he’s tolerating it. We can usually tell if he’s reacting to a food the first or second day of a trial, so if we make it three full days we’re in pretty good shape. We press on longer if needed, though, and we always let him get back to baseline (no reaction symptoms) after a failed trial before trialing anything else.
Of course you can get a picture. I know I haven’t posted any in a while. Here’s a recent one of Adam dressing up for “work” in Dan’s belt and tie. And another of him showing off his smile.
My sweet tooth sister, T, asks:
- For some reason you popped into my mind tonight when G was talking about easter candy - you’ll be able to eat it this year? How are you feeling dietwise - you haven’t run into any issues right?
You think I’m waiting until Easter? I’ve already consumed more than my fair share of candy, brownies, cookies, and cupcakes. You would be proud, T.
In all seriousness, though, it was hard for me to start eating again, more from a psychological point of view than anything. Now that Adam’s doing better I’m having an easier time finding things to pop in my mouth. I did ease my way into things and haven’t had any problems so far, thankfully. I’m eating everything now except for major dairy: milk, yogurt, sour cream, ice cream, etc, basically just avoiding large amounts of lactose. As I mentioned, though, I am eating things made with dairy and even got brave enough to try some cheese last weekend. I had pizza for the first time in 26 months, and it was delicious.
Squarepeg asks:
- Are there treatments for the primary deficiency?
I actually don’t know the full answer to this question. I do know that there are supplements that contain digestive enzymes. I know there’s Lactaid for lactase which is over the counter. There’s also Sucraid for sucrase, but it’s really expensive, like $500/bottle. We’ve got a ways to go before we even start worrying about that stuff, though. Right now our focus is on the foods themselves. We have to find out what Adam can and cannot tolerate first. Then we’ll be able to see which foods might benefit from digestive enzymes, etc.
Given the results of his recent food trials, though, it’s apparent that we’re not just dealing with a sugar issue. He’s obviously still got some non IgE allergies to proteins that we’ll have to deal with. It’s all just a bunch of trial and error right now. We’re just happy to have found some new foods that he can tolerate and are hoping that we’ll be able to find more.
Speaking of food trials, T asks:
- I can’t help but second the yay for sleep! How are the food trials going - do you think it has anything to do with that? Or it was just leading up to it?
So far we’re doing pretty well with the food trials. His fails so far have been bananas, sweet potatoes, and cod. His passes are black beans, green beans, and avocados, so he’s eating all of those every day along with his barley. We’re trialing pork trial right now. He’s still doing well with the Neocate, so we feel that we’ve already come a long way.
As for the second part of the question, yes Adam’s sleep has always been tied in with food. Always. The fact that he slept through the entire night the other night says huge things about how well he’s doing with all of the food stuff right now.
I think the fact that he’s doing so well right now is attributable to the fact that he’s at a good baseline with the Neocate and isn’t eating anything with sugars right now. I think those factors are important for the chance of success of his food trials as well. We hadn’t trialed any of our three food successes thus far with Adam directly before, so who knows if he would have tolerated them before or not. I do think we have a better shot at success right now than we ever have, though. If you think about it, he could have been having trouble with even the lactose in my breastmilk. Starting with a clean slate, so to speak, has been huge. All we can do is keep hoping for more successes.
So, I guess that ends our Q&A session for today. I hope that helped fill in the gaps a little.
Just a Couple Updates April 1, 2009
The meeting yesterday with the SPC investigator went fine, and he actually seemed pretty nonchalant about the whole thing. I explained everything and gave him supporting paperwork. The next step is for them to contact Adam’s doctors. They’ll be speaking with his pediatrician, his new GI, and his speech pathologist. The investigator also has to interview Dan at some point, but he said that he’ll probably be able to do it over the phone. I think it’s basically just a “going through the motions” situation at this point, but it’s still a pain in the ass.
I really appreciate everyone’s advice about all of this stuff. I do think we will be waiting until SPC closes our file before we move forward with all of the NJ crap. Just one more thing we’ll have on our side. As far as hiring a lawyer goes, that is not something we’ve decided to do at this point. Dan happens to be a lawyer, and although his specialty is not med malpractice, I trust him and his experience to be able to follow through with this stuff appropriately. (Not that I’m playing an inactive role in all of this, but the legal angle is all his.) If at any point we feel that we need more than that, we’ll move forward with other options.
So, onto other, less depressing, topics. I have quite the exciting news to report. Last night, for the first time ever, Adam slept through the night. He slept for 11 hours and 15 minutes without getting up. So good!
And the Nightmare Continues March 30, 2009
I fully plan to answer all of the questions posed in the comments section of my last post, but I think I’m going to wait until I’m in a better place to do so. Today was not a good day.
A SPC* investigator came to our house this morning. Adam and I were not home, but I ended up speaking to him on the phone this afternoon. We now have a home visit/interview scheduled for tomorrow afternoon. Have I mentioned the unfairness of this whole situation?
Then, for the icing on the cake, we got our discharge summary from National Jewish in the mail today. It was horrible. I cried while I read it. It was that bad. They blamed me for everything. I have done nothing but try to help my child, and they made it out to be the exact opposite.
I just love how they didn’t wait for Adam’s last test results to come back before writing it. Oh, it makes me so angry. This report has been sent to our pediatrician and God knows who else and is now a permanent part of Adam’s record. It’s so inaccurate that I could scream.
We will be writing a letter in response at the very least. Ugh, it’s such a frustrating situation, all of it. This shouldn’t be happening.
I Guess We’re Not Totally Crazy After All March 27, 2009
We got the last of Adam’s test results from Denver last Friday, the disaccharidase panel done via biopsy of the small intestine. This tested five different digestive enzymes: lactase, maltase, sucrase, palantinase, and glucoamylase. All five of them came back very low, less than the third percentile for each.
Yep, that’s right. We now have an actual test result to back us up. All of this food stuff isn’t in our heads.
I’ve discussed the results with two different GIs. I took Adam to see a new GI on Tuesday. I had actually scheduled the appointment before we arranged our Denver trip but decided to keep it in case we needed follow up care locally. I really liked the new GI, and he seemed to really understand what was going on with Adam. (And when I mentioned what had happened with the allergist in Denver his reply was that he didn’t have much use for allergists. Hah!)
Anyway, the Houston GI said that the results could be caused by one of three things: 1) a primary disaccharidase deficiency, ie. an enzyme deficiency that Adam was born with, 2) a secondary disaccharidase deficiency caused by damage to the mucosal layer of the intestine, or 3) lab error if there was a delay in getting the tissue into the container resulting in the enzymes present in the sample being wiped out.
Yesterday I spoke to the GI who we saw in Denver about the results. He thought that we could very well be dealing with a primary deficiency. He didn’t think the results were due to a secondary deficiency because there was no damage seen in the intestines. They looked fine both during the scope and under the microscope. He also didn’t think that the results were due to lab error. He said that the tissue sample is put in quickly to avoid that.
So, where do we go from here? Basically we just have to wait and see which foods Adam tolerates. The new GI said that we just have to go by food trials to determine if Adam is dealing with non IgE allergies to proteins in foods, enzyme deficiencies that inhibit his ability to digest sugars, or both. The Denver GI agreed.
So, that’s the plan. We’ll keep trialing foods, keep our fingers crossed, and see what happens.
I know several people have asked how Adam is doing now. He’s doing well, really well. The other day Dan said to me, “It makes me feel so good to not think of Adam as ‘poor Adam’ anymore.” That pretty much sums things up. He’s sleeping better, his mood is better, he’s eating better. He’s just better.
There are changes in him that I know other people probably don’t notice but that I see as huge. It’s all because he’s feeling better, and that makes us all feel better.
Adam’s doing well with the Neocate, and we’re making progress with our food challenges. The first two things we tried were bananas and sweet potatoes, and neither went well at all. In hindsight, though, that makes sense given the fact that they’re both high in sucrose. Since then things have gone better. In addition to his barley, he’s now eating black beans and green beans and we’re in the middle of an avocado trial right now.
The digestive enzyme results will be helpful in deciding which foods to trial when. It should be interesting to see how he tolerates foods with different sugars. Right now, though, we’re focusing on foods that are low in sugar in order to hopefully build up his diet some before we start experimenting too much.
It feels good to have a piece of the puzzle filled in. I don’t think it’s the only piece, but it definitely could be a big one. It will be a challenge to deal with the enzyme deficiencies, especially if they are indeed primary, but at least we know what we’re dealing with at least to some degree. Having a little light thrown on the situation is much better than fumbling around in the dark.
A Knock at the Door March 19, 2009
I was starting to feel relieved about the whole situation that I’m not talking about when we hadn’t heard anything from anyone a full week after the infamous meeting. I guess I shouldn’t have.
Last night at 10:15 a man dressed in blue knocked on our door. Apparently the folks at the agency I will refer to as SPC (just use your reversing skills to figure that one out) called the folks dressed in blue to come pay us a visit. How can I thank the psychologist at NJ enough for this hell?
Adam and I were asleep, so Dan was the one to meet with our visitor. He told Dan that doctors had called SPC concerned about Adam’s growth. That’s a new one. Our pediatrician, the one who has seen Adam since birth, has never had any concerns over Adam’s growth. I’m sure the folks at NJ didn’t bother talking to him about the issue.
Ugh, it’s so frustrating. I don’t claim to be the best parent in the world, but we have always tried to give Adam the very best. I work so hard to give him everything I possibly can, to make sure he’s a happy and healthy child. I have worked in the social.services field, and I’ve seen some very, very sad things. Being lumped in with that is disheartening. It just makes me so mad that we’re being put through this because we tried to get Adam better medical care. That is just backwards to me.
Anyway, things went fine with the man in blue. I think he was a little confused about why he was at our house. He even apologized for it.
I don’t know if that will be the end of it or if I will get a phone call or another knock on the door from the folks at SPC. I just want it to be over. We’ve got enough to deal with right now.
A “Little” Update March 13, 2009
I just wanted to follow up a little on my last post and some of its comments. First of all, I have gone back and deleted a couple of paragraphs. I have been advised/instructed not to blog about a certain issue. I hate, I mean hate, being told to censor myself, but whatever. I’m too exhausted to argue at this point.
If you read my original post (or any of the comments) you’ll know what I am referring to. I will keep you posted in a vague way. I’m just not going to spill my guts on the subject at least until it’s resolved. We haven’t gotten any phone calls or knocks on the door yet, so we’ll just have to wait and see how it plays out. We’ll get though that just like we’ve gotten through everything else.
Ok, onto a couple more points. I did fail to mention that I didn’t have a problem with the attending physician we dealt with during our stay at National Jewish. We didn’t have a horrible experience with everyone there, and it wasn’t everyone who chose not to believe us.
The attending physician never once said that Adam didn’t have an issue with foods. He was the one who suggested the Neocate only trial in combination with the 24 hour pH probe that led us to figure out the whole Neocate thing. We’re grateful for that. Unfortunately we dealt with the physican’s assistants more than him, and they were not helpful at all. Plus, the attending was not present for that last, horrible meeting, so the allergist who we had never met and who had such strong and differing opinions from us took center stage. So, it wasn’t all bad, but it certainly wasn’t all good.
Now, onto my comments about the comments on my last post. First of all, I appreciate everyone’s support more than I can possibly express. This whole process has been so hard. So freaking hard. Your support holds me up.
I will admit that it’s hard to hear people’s opinions when they differ from mine a great deal. However, I am open minded enough to read, listen, and ponder. Now, onto my thoughts.
No, Adam’s issues with foods are not just because he’s been on a limited diet for an extended period of time. We starting giving him solid food at 6 months just like everyone else does. He had problems from day one. And it’s not just an issue of solid foods themselves, he has always reacted to the proteins in my breastmilk, too.
And yes, we’re close to the situation. And yes, we’re more sensitive to it all, but that’s because we’ve lived through what he’s lived through.
I wish I could express what it’s like to watch Adam react to a food. It’s not just him having a bad night. Or him having weird poop one day. It is night and day. If you could have seen what he was like last weekend and then seen what he was like after he did the 24 hours of Neocate only you wouldn’t believe the difference.
It’s so hard to have a child who is so miserable that all he can do is scream. Sunday afternoon we had to just pop him in the car seat and hit the interstate, because it was the only way we could get him to stop melting down. And then by Tuesday afternoon, after we had pulled the barley and applesauce, and let his system calm down on just the Neocate, he was a happy little boy, running around the hospital, laughing and having a great time, even with a darn tube down his nose and throat.
It’s more than just one thing with him. It’s not just that his cheeks flare up so badly they look windburned when he’s reacting and they’re completely clear when he’s not. It’s not just his mood. It’s not just his sleep, or poop, or reflux, or any one thing. We’ve watched time and time again a complete list of symptoms pop up when he’s reacting.
So, yeah, I disagree with the allergist 100%. There is something going on with Adam at a physical level. Cellular mediated intolerances/allergies do exist. They are not something that parents make up. They are mediated by something other than IgE, so they don’t show up on a blood test, but that doesn’t mean they don’t exist.
I will admit that I watch for food reactions more than a parent with a kid who doesn’t have food issues does. That just comes with the territory. I want nothing more for him to succeed with food challenges, though. That has always been my goal for him.
And while I plan to elaborate on the breastfeeding/weaning topic later, I do have a couple of points to make on that subject, too. Yes, I did not want to have to wean Adam. Especially cold turkey like that. I will be the first to admit, though, that I think the switch from breastmilk to Neocate is a very good thing for him.
It’s important for him to have a base nutrition that his body doesn’t react to. There were too many variables with the breastmilk even with me on a very limited diet. And there’s definitely a chance that he was still reacting to something in my breastmilk even after I had eliminated so much. The Neocate gets him to the ever important baseline.
So, while I have grieved, and continue to do so to some degree, over the end of breastfeeding. And while Adam has definitely been going through a transition to a life without nursing, I know that the benefit that the Neocate will provide him is huge. If I could lactate Neocate, I would. Since I can’t, this is the best we can do right now.
Phew. So, that’s that. You can see why I threw those quotes in the title of this post.
So, what now? We added barley back Tuesday evening after Adam was done with the probe. He’s doing ok with that, so onward we go. We’re not adding back the applesauce since that’s the suspect food. We started trialing bananas today, and we’re keeping our fingers crossed. He likes them, and I so hope this will start us out in the right direction.
I really do think we’ll have some successes. I sure hope so. I really think there’s a good chance that there was something left in my diet or something in Adam’s diet (applesauce?) or both that he wasn’t tolerating. We know that if Adam’s reacting to one thing it can appear that he’s reacting to others when he’s really not, like with the Neocate. It’s just his system going haywire. The hope is that’s what was going on and now that we’ve got him a non reactive base of Neocate that things will start looking up. I guess we’ll find out soon enough.
It’s Been One Hell of a Rollercoaster Ride March 11, 2009
I don’t even know if I can sum up my feelings on the events of the past few days properly. We’ve definitely had some highs and lows.
So, we tried the Alimentum formula with Adam this weekend, and things went from bad to worse. It was not good at all, so back we went to the Neocate.
We headed back to National Jewish on Monday and sat down with the team to discuss the plan for the week. At that point Adam was still reacting and still a mess, so we definitely needed a plan. The doctors decided that it would be beneficial for Adam to have a 24 hour PH probe study done in order to see if he was still having reflux problems that could be contributing to the situation. The PH probe study has to be done while you’re in the hospital, so Adam and I ended up staying overnight Monday night.
The probe results showed that Adam’s reflux is borderline, and the doctor didn’t think reflux meds would be necessary. We also got Adam’s biopsy results back Tuesday afternoon. They all came back normal.
The really valuable piece of info we gained came as a result of the fact that they had Adam on Neocate only for the 24 hours of the probe. To say that he started doing better would be a vast understatement. We finally got to see our happy boy again, and it was so nice. Even with the probe still down his nose/throat he was running around, smiling, laughing, talking up a storm, and his other reaction symptoms started calming down.
So, what did that tell us? Well, it told us that he wasn’t reacting to the Neocate like we thought he was. He was either reacting to his barley cereal or applesauce. I honestly don’t think we would have been able to figure that out without him going Neocate only for the 24 hour probe.
(Side note: Someone asked in my comments what symptoms Adam displays when reacting. We he eats a food that his body doesn’t tolerate several things happen. The eczema on his cheeks flares up badly. He has major sleep disturbance to the point where he can’t sleep through a sleep cycle causing him to get up every 45-90 minutes. He can’t even sleep through a nap. His poop gets mucousy and foul, and he gets a resulting red ring diaper rash. He refluxes. He bites because he hurts. He gets super fussy. Not just toddler fussy, meltdown fussy. He screams and screams and is just a total mess. And when things get bad enough he starts refusing to eat. Basically, he turns into another kid altogether.)
So, the Neocate discovery was the high. Now for the low. Today we headed back for a group meeting before we head back home tomorrow. We could stay longer and do food challenges here, but we’re ready to go home, and it will be easier to do them at home anyway. So, in this meeting we immediately got blindsided by an allergist who we had never met before, and consequently had never even set eyes on Adam before. He proceeds to tell us that there’s no way that Adam’s symptoms can be food related. Basically, we’re just making all of this stuff up.
The people here have not gotten the whole non IgE thing from day one. To them if Adam’s skin doesn’t puff up during a skin test or he doesn’t have eosinophils present on his biopsies then there can’t possibly be anything going on in his body related to food. I wish I could express my frustration at dealing with these people, but I know I can’t come close to describing it.
They didn’t stop long enough to listen to us or to watch what was going on with Adam while we were here to even try to understand. They are just writing us off as crazy parents.
I am trying my hardest to focus on the fact that we know him. They don’t. It’s clear as day that Adam reacts to foods. Clear as freaking day. Just because I don’t need to tote around an epipen doesn’t mean that there’s not something going on with him.
So, yeah, a great day, huh? Do these people think that we would have gone through what we have if we didn’t have to? Do they think that our efforts to add in new foods to Adam’s diet for the past 18+ months were a joke? Do they think we spent thousands upon thousands of dollars and spent time away from home that we didn’t have (especially for Dan and his work) to make this trip possible for the hell of it? Why would we go through all of this if we weren’t trying to help him? I just don’t understand.
So, we are getting on a plane tomorrow, and I am so freaking glad. I cannot wait to get home and put all of this behind us.
We do have a plan for going forward, and it’s one that we will be carrying out without the folks here in Denver looking over our shoulders with disapproving eyes. Once we figure out the barley/applesauce thing we will be starting food trials again. The dietician here was the one helpful person we met with, and she helped us come up with a plan for introducing which foods in what order.
It wasn’t a totally wasted trip, because we’re bringing home a little boy who now has a solid base of nutrition that he is tolerating. The Neocate provides his nutritional needs, and we can work from that base to expand his diet with other foods. We have made progress even if we had to deal with people and a situation which was very disappointing. I just wish we would have had a more positive experience. It’s hard enough to deal with all of this stuff as it is.
I Knew I Needed This Blog March 8, 2009
Can I just say how much I heart the internets? Thank you guys so much for lifting up my spirits at a time when I desperately needed it. I will fully admit that I’ve sucked it up as a blogger since Adam was born, but I think I’m finding my way back. It’s been such a welcome relief to come to this safe place and spill my guts.
I’m still pretty darn frustrated with how things are going here, but we’re hanging in there. I think a lot of my frustration stems from the fact that it seems that Adam’s situation isn’t really understood that well here. They’re used to dealing with IgE allergies more, and we’re in a whole different ballpark from that.
At the end of last week the people at NJ had already started talking about doing food challenges with Adam as early as tomorrow. Um, hello. We still haven’t found a formula he can tolerate. That’s step one. There’s no point in adding a new food to the equation when he’s reacting to the formula. Plus, Adam’s having to go through a lot of stuff that’s pretty pointless in my mind.
On the other side of the coin, however, I have been pleased with how things have gone with the folks in the GI department at Children’s. We met with the head GI on Thursday afternoon and that went well. Then Adam had his endoscopy and colonoscopy done Friday afternoon, and we were happy with the GI who did the procedure.
Adam wasn’t a happy camper at all about the whole scope situation, but we all survived. Visually things looked ok in his esophagus, stomach, small intestine, and large intestine, but there were some questionable areas in his rectum. We should get the biopsy results back on Tuesday which should give us a lot more info to go on.
Our big issue right now is with the formula. We have learned a couple of things, though. Adam had to be off food and formula for about 24 hours before the scope this afternoon. Well, low and behold, his reaction symptoms started to abate quite a bit. He went back on the Neocate after his scopes, and he started reacting right back again.
Is was totally clear that he wasn’t tolerating the Neocate. The people at NJ wanted us to give it through the weekend, but we just couldn’t do it to him. He was a complete and total mess, and there was no point in prolonging his agony, so we made the executive decision to switch formulas.
We really think that the problem he had with the Elecare and Neocate was the corn, so we’re now trying one of the few formulas that has no corn in it, the read to feed version of Alimentum. It’s a hypoallergenic formula as opposed to an elemental formula like we’ve been trying, so there’s definitely a chance he could react to it to since it does contain proteins (broken down but present nonetheless). We’re just going to keep our fingers crossed really tightly and hope for the best.
So, I guess that’s the update. We’re in the middle of a much welcomed break this weekend, but we’re back at it tomorrow morning.
This Sucks March 5, 2009
I am having a really hard time here. I’m exhausted and frustrated. And to be honest, somewhat disappointed.
Adam’s still a big ball of reaction. He’s not tolerating the Neocate Jr. either. They changed the concentration that we’re making it at today, but I don’t think that’s going to help. He’s just a mess.
Adam has his endoscopy and colonoscopy tomorrow. I’m afraid that they won’t find anything and then we’ll be on our own yet again.
I guess I shouldn’t have gotten my hopes up that we would find THE answer here. Maybe things will turn around, but right now I’m seriously discouraged.
I hate seeing him like this. This can’t be what’s in store for him. This can’t be his life. We have to do better. We have to find something he tolerates better. I need my happy boy back.
Denver: Day 1 March 3, 2009
Well, I guess today isn’t actually day 1 since we arrived yesterday, but it was our first day at National Jewish. And boy are we exhausted!
I was so ready to walk through those doors this morning. Adam started reacting to the Elecare, so we were in desperate need of help. We had a full day complete with a meeting with our nurse, a long meeting where I went over Adam’s complete history, a meeting with the doctor, and meetings with both the dietitian and psychologist.
We have at least a temporary plan. We have switched Adam from the Elecare to unflavored Neocate Jr. We tried that elemental with him while I was still breastfeeding, and he didn’t tolerate it, but we’re trying it again without breastmilk being in the equation. Right now we’re making it at a lower concentration, infant strength instead of toddler strength, in hopes of getting his body to tolerate it better.
The other thing we’re really having to work on is getting Adam to drink enough formula. The most we’ve been able to get him to drink is 12 ounces in a 24 hour period, and that’s with mucho effort on everyone’s part. They want his intake to be double that. The dietitian helped me with a new plan/schedule to try to get him to drink more. We’re also experimenting with different types of cups to see what he’ll drink from the best.
I’m still pumping even though the chances of Adam ever nursing again are slim to none. My heart is just breaking over that thought. I can’t even type it without crying.
So, that’s where we’re at now. We head back early tomorrow morning for another day. This is not easy. Not one part of it is. I’m hoping so much that we’ll come out on the other side in a better place, though. Everyone here is committed to helping us do so. We just have to hang in there.
The End of an Era? March 1, 2009
So, does the fact that we had to start Adam on Elecare as a result of this debilitating stomach virus mean that breastfeeding has come to an end for us? I’m sad to say that I’m pretty sure that it does. We’ve had a more difficult breastfeeding journey than most, but neither of us were ready for it to end. Especially like this.
The past few days have been very hard. Adam doesn’t understand why he can’t nurse, and it just breaks my heart. Up until Thursday night he still nursed to sleep for naptime, bedtime, and back down multiple times overnight. It has not been easy to pull that out from under him all of a sudden. Dan has taken over sleeptime duty which is the only way it’s going to work right now. It hasn’t been easy for any of us.
I wish I could say that I thought there was a real chance that we’d uncover something during our Denver trip that would allow us to go back to nursing. I don’t think it’s going to happen, though. I’m continuing to pump and dump for now. We have to make sure he tolerates the Elecare, and we need to see what comes as a result of all of the testing in Denver before I intentionally let my supply dwindle.
Speaking of supply, my boobs are not fans of the pump. They are great at breastfeeding, but they are not loving the pump one bit. My supply already took a hit from the virus and now the pump is trying to do the rest of it in.
I’m just hoping that Adam tolerates the Elecare. He seems to be doing ok on it so far (knock on wood). It’s only been 2.5 days, so the jury is still definitely out, but we’re keeping our fingers crossed. Realistically speaking the only way we’d go back to breastmilk is if he reacted worse to the Elecare, and so far (knocking on wood again) that hasn’t happened.
This is a very emotional time for us right now, and it’s not going to be easy for quite a while. My hope, though, is that this ends up helping us in the long run. Adam’s been reacting for 6 weeks straight even with me down to 3 foods plus an oil. My health has gone in the toilet big time. I weighed in at 99 pounds this morning. That’s the first time I’ve been in the double digits since high school. You can see where a change is needed for both of us.
I’m not staying on my salmon, cucumber, applesauce, and canola oil diet right now. I physically can’t do it after the whole run in with the virus situation. I am, however keeping the top 8 allergens (milk, soy, eggs, wheat, peanuts, tree nuts, fish, and shellfish) as well as corn and it’s derivatives out of my diet for now. It’s been heaven to eat things like banana, rice, broccoli, and chicken and to have a glass of OJ. The guilt, though, oh the guilt.
I feel tremendously guilty about all of it: eating food when Adam can’t, not being able to be the one to ease him into sleep, not being able to explain to him why Mama can’t nurse him anymore. I just wish I could make things easier for him. That’s my job, and I hate not being able to do it right now.
So, that’s where we’re at right now. We’re hopping on a plane tomorrow to head out to Denver. Dan has not come down with the virus yet (knocking on wood a third time) so we’re hoping he’s in the clear.
I hope to be able to get on and blog at least a couple of times while we’re there. Our days are going to be busy, but I need this place right now.
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