16 Months (and a few days) May 14, 2008
Adam hit the 16 month mark on the 10th. Our most recent news comes on the allergy front.
After a long wait, we finally got in to see Adam’s new allergist last week. It was not an easy visit, combining the fact that Adam decided to start his day extra early, a drive into the Medical Center during rush hour, a missed morning nap, and a 2.5 hour stay at Texas Children’s in which Adam hit meltdown mode, but we managed to survive.
The allergist said that we’re doing everything right, and her one main suggestion was to run some blood tests. Like every other doctor we’ve consulted on the issue, she said that Adam’s symptoms are consistent with cell mediated intolerances as opposed to IgE allergies, the kind that show up on blood tests, but that she wanted to make sure anyway. She ordered a CBC and an overall IgE level as well as IgE levels for about 10 different foods.
After heading back home for a much needed nap, we ventured out to the lab. Even a well rested Adam does not like to have his blood drawn. He screamed the entire time it took to draw four vials. We both lived to see another day, though, and we should get the results back at the end of this week or beginning of the next
The allergist wants to see us back in 1-3 months depending on how Adam’s doing as well as on how the test results come back. Until then, we keep plugging away at our food trials hoping to find something else that Adam can tolerate. We haven’t had any success in that department lately, but onward we go.
So, while my not so little guy (I realized he’s now half my height and nearly a quarter of my weight) turns 16 months, I turn 31 years. Yep, it’s my birthday today. I’d like to think I’m another year wiser, but who knows. I had actually managed to convince myself that I was actually turning 30 instead of 31 this year for awhile there. Gotta love denial.
My New Sparkly April 24, 2008
Dan and I got engaged when we were beyond broke college students. Thinking back it’s almost comical to realize all the things we did in order to save money. Dan didn’t even have a part time job at the time, so he cashed in his meal plan in order to buy my ring.
That ring will always be special to me. I was wearing it when I got married. I was wearing it during every single IVF retrieval and transfer. I was wearing it when I gave birth to Adam.
Dan has always promised me a new ring for our 10th anniversary. And believe it or not, that’s coming up next month. I spent a lot of time researching diamonds, settings, and vendors before I made my decision. It was a really fun process. Who knew there was so much to learn beyond the 4 C’s?
I’ve been waiting with excited anticipation the past few weeks as my ring was being made. I found out yesterday afternoon that it was complete and got the images this morning. Woo hoo! I am over the moon!
I can’t wait to get it now. Of course I’ll have to find some more patience somewhere as I wait for our actual anniversary on the 16th to wear it. It’s gonna be hard, though, because I can’t wait to put it on my finger!
Gobble Gobble! April 13, 2008
What? Another post so soon? Ah, yes. I have wonderful news to report. We got turkey! Adam’s been eating it for a week, and things look good.
This is our biggest success to date. Adam doesn’t really care for the turkey, but it is such a huge accomplishment to find a protein that his body can handle especially one that we know that he reacted to in the past.
Last night I had turkey for dinner for the first time in almost 10 months. It was so nice to be able to eat something other than fish. This diet is not easy, but getting to add another protein source, and one that doesn’t swim at that, makes things feel so much more doable.
Ok, now on to answer some questions from the comments section of my past couple posts. When I said that Adam had two foods, I just was referring to the solid ones. Yes, breastmilk most definitely counts. I’ve got to give it it’s due, for sure. Even though Adam now eats solids three times a day, breastmilk is still his #1 food. He still nurses 10-11 times a day, 6 times during the day and 4-5 times overnight. I guess that might seem like a lot for a 15 month old, but it’s all relative. Before we found solids that he could tolerate he was nursing 12-15 times a day.
I’m so glad that I can continue to breastfeed him. Before I had him I would have never pictured myself nursing a toddler, but now it’s just right for us. It’s also so important for him given all of his food/GI issues.
What about adding more pureed fruits? Well, Adam and fruits don’t get along very well. So far post endoscopy we’ve tried pears, peaches, and prunes without success. He doesn’t tolerate fruits well through my breastmilk either. I’m only eating oranges and apples right now. We’ll definitely still attempt other fruits that we haven’t tried. Banana is on definitely on the list, because I think it’s a food that could help us overcome the massive jump to table food given our texture issues, but we’re going to try to find him a veggie first.
What about blood tests? Niether Adam’s previous allergist (we’re waiting for a May appointment with a new one) or his GI think there’s much point to allergy blood tests. We’re dealing with non IgE mediated intolerances that won’t show up on a blood test like traditional allergies will.
Is this something Adam will grow out of? Yes, we sure hope so. Actually, we’re already seeing evidence that he is to at least some extent. He reacted very strongly to turkey in my diet. We discovered the extent of it after I started the elimination diet. Well, here we are about 10 months later, and he can tolerate it in his on diet now. We see that as a very promising sign.
It’s still obvious that he has many issues. I mean the kid reacts to rice cereal for Pete’s sake. Don’t even get us started on oatmeal. Things are looking up, though, and while he’ll be dealing with this food stuff for what I imagine will still be quite a while, things are improving.
I think that answers them all. Anything I missed?
And now since I didn’t do a formal 15 month post with pics and the like, I figured it would be a good time to post my first video on this blog. As I mentioned, Adam is not a fan of texture, so we’re giving him pureed foods. That doesn’t mean he doesn’t like to lick on some apple slices from time to time. Here he is doing so complete with one of his cute little laughs. Just seeing him enjoy food like that puts a big smile on my face. We’ve certainly come a long way.
Lucky Duck April 8, 2008
I have to admit that sometimes I get down dealing with Adam’s GI issues. It’s hard. Plus, this diet is rather depressing at times.
When I hear a friend happily recounting all of the things that her toddler ate when they went out for dinner the night before, it’s hard for me not to think about the fact that my toddler only has two foods and that I haven’t been able to go out to eat since before Adam was born.
And then I give myself a good smack and realize what I’ve just said to myself. Hey, my toddler has two foods! That’s HUGE for us. And so what about not being able to go out to eat. I will be able to again someday. Maybe not anytime soon, but someday. And the reason I can’t eat at restaurants is because I’m doing this for my son. Needless to say, he’s more important.
Our reality when it comes to the food department is just different than most. We’re celebrating that fact that our soon to be 15 month old can now eat both applesauce and barley cereal. Sure it took forever to get there, and there’s a growing list of things we’ve tried that he hasn’t been able to tolerate, but this is real progress for us. I just have to remember not to compare.
Reflection is a good thing. I’ve been thinking a lot lately about the IVF days. I’m not exactly sure why, but in doing so I’ve been able to remind myself how incredibly lucky we are. Sure, we’ve got issues to deal with, but we’re doing it with our son. Our son! I still have to pinch myself sometimes.
So, things are good even if they’re tough sometimes. I’m one lucky woman to be living the life I am.
Hello? Is This Thing On? March 1, 2008
Yeah, I know. I suck. I can’t believe it’s been over a month since I last posted.
Ok, so last time I managed to sit down and write a post Adam had had his second endoscopy and was suffering from a GI reaction to his 12 month vaxes. His biopsies from the endoscopy all came back normal, so that was wonderful news. His reaction continued for 3 weeks when I decided to cut out pork from my diet since I knew that his stomach virus a few months back caused him to start reacting to the chicken in my diet.
Since pork was the last source of protein in my diet it sucked to go without it, but it didn’t take too long before we found out that that was what was happening. I added it back in and back came the reaction, so no more pork. Obviously I had to get some sort of protein back in my diet, so I tried salmon and thankfully that worked out ok. There’s variety with pork but not so much with salmon, so I’m already getting tired of it. You do what ya have to do, though.
With that situation all wrapped up it was time again to face our big hurdle, solid food. It’s definitely been an uphill battle. It seems like the endoscopy might have helped the pylorus issue, but Adam’s been reacting to most of the foods we’ve tried. He finally just got to feeling so badly that he started refusing to eat solids at all, so we’re taking a break now so his little system can calm down.
It breaks my heart to see him hurting. I wish there was more I could do. We’ll start again when he’s feeling better, because he really does need to have more than breastmilk at this point, but I know that it’s going to be a rough road. We’ve got all of the reaction stuff to deal with, plus Adam’s got some major texture issues from us having to wait so long to feed him solid food. It’s definitely not going to be an overnight jump from exclusively breastfed to eating three square meals a day.
Let’s see. What else has been going on since I last posted? Adam turned 13 months a few weeks back. He took his first steps a little over a week ago. Now, that was exciting stuff. We’re also stuck in the middle of the 2-1 nap transition which is not so exciting.
I have to admit I’ve been feeling overwhelmed the past couple of weeks. The diet, the lack of sleep, the frustrations with Adam’s poor little tummy and the effect it has on him, well, it just all adds up.
Despite all of that, though, I am immensely enjoying watching my son grow up. He amazes me. He’s such a energetic, fun loving little guy. I just hope that I’m able to deal with all of the stuff that’s going on in his life the best way possible so that I can be the kind of mom that he deserves.
Good News and Bad News on the GI Front January 24, 2008
Adam had his second endoscopy today. The plan was for the GI to go in with the scope and see if his pylorus looked the same as last time. If so, he would use the balloon to stretch it open some. There was a chance that it was spasming last time, but the GI didn’t think that was the case.
Sure enough, the pylorus was still so small that the scope couldn’t fit through. The GI stretched it with the balloon from 8mm to 12mm as it can only be stretched so much at once safely. The opening is still small for someone Adam’s age, so he may need the procedure repeated down the line, but only time will tell.
Once the GI dilated the pylorus he was able to get into the duodenum unlike last time, so he went ahead and took biopsies there. We should get those results early next week.
So, that’s the good news. We’re very glad things went so well. Adam had a tough time in recovery again this time but was given some Morphine which helped a lot.
Now onto the not so good news. Adam is having a bad GI reaction to the Prevnar and/or Varicella vaccinations he got at his 12 month check up two weeks ago. This is beyond frustrating to us. The GI said that Adam’s intestine looked inflamed which is no surprise given what’s been going on.
So, even though his pylorus has now been opened up some we’re still on hold on the solid food front at least temporarily. We need to wait until things settle down with his little system, and the GI wants us to wait until we get the biopsy results back as well. We’re hoping so much that things improve soon and that those biopsies come back normal, so we can keep moving forward.
A New Addition to the Family January 20, 2008
Oh, don’t worry. There will be no surprise pregnancy announcements on this blog. Last time I checked you need sperm and eggs for that, and given the whole azoospermia thing plus the fact that I haven’t ovulated since before Adam’s FET there’s no chance of that happening around here.
No, I’m referring to our new furry member of the family. His name is Winston, and he’s a 6.5 month old sweetie. He’s only been here 24 hours, but he’s quickly making himself at home.
I’d almost forgotten what it’s like to have a young cat around. He’s got a ton of energy and is already showing off his personality.
Salvador isn’t exactly happy that he’s got a new brother, but I know that he’ll come around soon. It actually hasn’t been that bad. Salvador’s shared a few words with Winston, but there has been no fighting or slapping. Earlier today Salvador was following Winston’s every move. I have a feeling they’ll be playmates soon enough.
I’m really impressed with how quickly Winston is acclimating. He’s explored the house top to bottom already and has staked out a favorite spot behind the big TV in the living room. He’s a very friendly and sweet cat and is good with Adam. Adam has already grabbed a handful of fur petted Winston, and Winston didn’t bat an eye. I think he’s going to fit in quite nicely.
So That’s What a Regular Ultrasound Looks Like January 17, 2008
I had way too many encounters with the dildocam during my IVF days and had what was probably more than my fair share of ultrasounds while pregnant with Adam, but I’d never had or even seen a non reproductive related ultrasound until today.
Adam’s GI wanted him to have an ultrasound done before his second endoscopy, so we headed off this morning to have that done. Unfortunately, we didn’t really learn anything new. The ultrasound tech really couldn’t get a good look at the pylorus given Adam’s size. He did, however, take measurements and pictures of Adam’s other organs, so I guess we should hear about that if anything happens to turn up amiss.
I wish I could have gotten a better view of his tiny little organs, but I had to hold down his arms and attempt to comfort him while he cried through the whole thing. Poor guy. His second endoscopy has been scheduled for a week from today, the 24th, so now we’re just waiting impatiently for that to roll around.
One Year Ago Today January 10, 2008
The morning of January 10, 2007 we headed to the hospital so that I could be induced. Later that night our little man, Adam Daniel, entered this world and stole our hearts. I can hardly believe that my baby is a year old. I guess he’s not much of a baby anymore.
We went through so much to bring this little guy into our lives, and it was worth it a million times over. I know there’s no way for him to understand that it’s his birthday, but the meaning of this day is not lost on me at all. It’s a day for me to reflect upon not only the last year but all the years prior that we spent trying to have him.
My MIL sent us On the Night You Were Born, and I couldn’t hold back the tears as I read Adam the first page.
On the night you were born,
the moon smiled with such wonder
that the stars peeked in to see you
and the night wind whispered,
“Life will never be the same.”Because there had never been anyone like you…
ever in the world.
Happy Birthday, my special little guy. I love you!
Breathing a Sigh of Relief January 9, 2008
Adam’s GI called this evening with his biopsy results. They came back normal, no signs of eosinophils, so we can finally exhale. An eosinophilic disorder diagnosis was the one I was fearing the most, and I am so relieved that he doesn’t have that. Now we don’t have to worry about forcing him to wean to Neocate or any of the other things that go along with that diagnosis.
The GI wants Adam to have an ultrasound done before the next endoscopy, so his nurse will be calling tomorrow with scheduling info for that. We should be able to have that done pretty soon, and then the endoscopy will likely be scheduled for next week sometime.
He said that one endoscopy with the balloon may not be enough, that often a second one will be needed. Also, there’s a small chance that the pylorus may have been spasming during the first endoscopy, and the opening could look larger the next time he looks in there. We’ll cross those bridges if and when we come to them. Right now we’re just focusing on getting through the ultrasound and next endoscopy.
Good News from the Upper GI January 4, 2008
Once again Adam was a little trooper for his upper GI this morning. Thankfully it wasn’t a lengthy procedure. We were in the waiting room far longer than in the x-ray room.
Adam doesn’t think Barium is all that great, but the nurse got it in by syringe after he just cried harder when she tried to make him take it from a bottle. I guess she didn’t believe me when I told her that there’s no way he was going to take anything from a bottle.
And can I just say that I think it’s a sad reflection on the state of breastfeeding in this country when upon being told that Adam doesn’t take bottles the nurse asked, “Well then how does he eat?” We got a similar question before I fed Adam in the recovery room after his endoscopy. It’s like it’s not even an option for him to be breastfed at his age. I guess it must seem really odd that he’s still exclusively breastfed. Ok, I’m done with my tangent. Back to the post.
The radiologist didn’t see any blockages or other structural problems that would prevent the GI from going in with a balloon to try to open things up some, so that was good news. I talked to the GI this evening, and he said that he’s going to run Adam’s case by some colleagues early next week, and that we’ll probably be looking at another endoscopy so he can go in there with a balloon. I asked if that would be happening next week, but apparently it’s really hard to schedule and anesthesiologist, so we might have to wait longer.
He said he’d get back in touch with me probably on Tuesday after he talks with the other doctors and gets the biopsy results back. Until then we wait.
That Explains That January 3, 2008
We finally got some real answers from today’s endoscopy. They weren’t answers I was expecting but answers nonetheless.
While Adam was recovering from the anesthesia his doctor went over what he saw with us. He walked us through the digestive tract, saying that his esophagus looked healthy as well as his stomach. Then we found out the real finding. He said that the opening from Adam’s stomach to small intestine is very, very small. So small, in fact, that the GI couldn’t even fit his 9mm diameter scope through it. So, that explains why Adam’s been able to tolerate breastmilk but not solid food.
The GI also took biopsies of various areas to check for an eosinophilic disorder. We’re hoping that the structural issue is the only one we’re dealing with, but we’ll find out for sure when we get the results back early next week.
So, the next step is for Adam to have an upper GI series done so the doctor can see exactly what’s going on in there. I just got a call about that, and we’re having it done tomorrow morning.
Then based on the upper GI results the doctor will be able to tell if the opening from the stomach to small intestine can be opened with a balloon or whether it will have to be surgically opened. We still have a couple of procedures ahead of us, but at least we now know what the problem is.
Adam’s protein intolerances appear to be a separate issue, but as long as my elimination diet keeps doing the trick he should be able to keep breastfeeding as long as the biopsies come back ok. Such a relief.
Adam was a total trooper as usual today. He woke up very cranky from the anesthesia and has a sore throat now, but he’s hanging in there. I’m sure he’ll be back to his old self in no time.
I can’t help but feel guilty that we didn’t find this stuff out earlier. I know that I don’t possess a crystal ball, but I would love to have spared him some of that pain. I’m glad we have a plan to move forward now, though. Plans are very good things indeed.
The Truth January 1, 2008
I’m not big on resolutions, so instead I thought that for my first post of the new year instead of writing another standard update type of post I’d actually sit down and really blog the truth. So, here goes. This is the reality behind the updates.
I’m scared. Adam has his endoscopy on Thursday, and I’m terrified of the results. It may be an oversimplification, but the way I see it things can go one of two ways. Either we find out that whatever is going on is treatable by meds and we continue on with breastfeeding or we find out that Adam has something in the nature of a eosinophilic disorder and we’re forced to wean to Neocate and our world gets flipped upside down.
I’m heartbroken by even the thought of weaning him right now especially in an abrupt manner. It goes against every parenting philosophy I hold dear. I know I started out hating breastfeeding, but now the opposite is true. And to think of forcing him to give up something that is so much more than a mode of nutrition is too much. It may not come to that, and oh I hope it doesn’t, but I do know that it’s a possibility. I have to admit that I’ve shed tears just thinking about the chance that it could go that way.
I really am so overwhelmed right now by so many things. Parenting Adam is so much harder than I ever imagined it would be. I’m not complaining, truly I’m not, because it’s also so much more rewarding than I thought it would be. It’s just hard sometimes.
I’m tired. I haven’t slept more than a three hour stretch in over 6 months and those stretches are few and far between these days. A good night means getting up only four times to nurse Adam back to sleep, a bad night is six or seven. I don’t blame him one bit, because when Adam wakes up it’s either because he’s hungry or hurting and between the tummy, reflux, and constant teething he’s got more than his fair share of hurt. It’s just that we’ve been having more bad nights than good recently, and my body can only adjust so much.
And this diet can be quite depressing sometimes. It is so worth it. So worth it! But it’s not easy. I figured out why it’s harder than a diet you go on to lose weight (besides the obvious fact that there’s not a whole lot I can eat). The difference is that I can’t cheat. Everyone cheats on a diet. Heck, even a lot of diet plans have cheating built in. I can’t do it to him, though. I won’t.
I had to bring my own food for Thanksgiving dinner. There was no candy in my stocking this year. I haven’t been out to eat since before Adam was born. It’s been almost 11 months since I had any form of dairy and 6.5 since I had any soy, eggs, wheat, nuts, seafood, beef, or turkey. I lost chicken a little ways back, so it’s pork at every meal. On the flip side, though, as hard as it is, I wouldn’t hesitate to continue on if it means I don’t have to wean Adam. I’ve got a lifetime to eat whatever I want. I can do this for now.
What’s harder for me than my diet is Adam’s diet. “So, what stage food is your baby eating now?” Um, that would be none. I hate so much that his sensitive little system has yet to be able to tolerate solid foods. He’s almost a year old now, and I’m really worried about what’s to come in that department. It can be overwhelming to be his sole source of nutrition at this age, but I’m so thankful that I’ve been able to do it for him.
So, that’s where I am right now, scared, tired, and overwhelmed. I don’t know if things will look better or worse after Thursday. Dan’s always telling me that things will get easier. I guess that’s how we make it through the tough times, thinking about the fact that there will be easier times ahead. I just want Adam to be ok. I want things to get better for him. The rest will work itself out.
That Was Quick December 13, 2007
I got a call from the new GI’s office Tuesday afternoon letting me know that someone had canceled their appointment for yesterday. We snagged it and headed off to see the new GI early yesterday morning.
I definitely like him better than the old GI. It seems that he actually wants to figure out what’s going on with Adam instead of passing us off to the allergist or just recommending formula. He confirmed the multiple protein intolerance diagnosis and said that a likely reason for Adam being unable to tolerate solid food is inflammation in the GI tract. He recommended that we schedule an endoscopy and check things out in there.
So, that’s what we did. Adam is scheduled for an endoscopy on January 3rd. I hate that he’ll have to go through the whole IV and anesthesia thing again, but we do need to see if we can find out what’s going on.
The GI said that depending on the degree of inflammation that it may be treatable by medication. There’s also a possibility that we could be dealing with something more severe than that, but we’ll just have to see when we get to that point.
He did say that I need to acknowledge the fact that Adam may need something more hypoallergenic than my breastmilk even on the elimination diet. The thought of weaning him before he is ready breaks my heart. I have to remember not to get ahead of myself, though. We just have to wait and see what we find out from the endoscopy. Hopefully it won’t come to that.
11 Months December 11, 2007
Adam turned 11 months old yesterday. I took him in for his growth check appointment last Friday, and he’s up to 21 lbs even and 30.5″. His height looks great, still 75th percentile. He is dropping down in the percentiles some for weight, but he’s still gaining so the ped says he’s doing fine. The GI can really just kiss my ass with his “falling behind” BS.
We’re still having a tough time with the solids, and it’s very much an on again/off again trial and error type situation right now. It’s really hard not to get frustrated about it, but I’m trying. Sometimes I just feel like the clock is ticking. I mean, what happens if we get to the one year mark and he still can’t tolerate solid food? I just have to make myself take a deep breath and take things one day at a time.
I asked his doctor at the appointment on Friday what to do about solids, reflux, etc, and he fully admitted that he didn’t know. He said he has yet to figure Adam out. He gave us a referral to a new GI who is supposed to be really good. I called to get an appointment and because Adam’s a new patient for this doc we couldn’t get an appointment until March 4th. Thankfully our pediatrician called and got them to get us in sooner, so our appointment is now scheduled for January 8th.
We put up our Christmas tree this past weekend, and Adam seems to be enjoying it as much as we are. Dan and I have lived together for almost 12 years, and this is the first year we’ve ever had a tree. It’s very special to be sharing the experience with our little guy.
And speaking of special, I don’t even think I can put into words what it means to me to have three stockings hung on the mantle this year. We’ve waited so long, and I’m so very thankful that this is the year.
Thanksgiving Trip and Medical Updates Galore November 30, 2007
We seemed to have managed to survive our first overnight road trip. Adam had a bit of a tough time, though, with the long hours in the car on top of having a food reaction and cutting tooth #7 while we were away from home.
On Monday I took him to see the GI, and that was a big disappointment. We had to wait an hour to be seen and then all I got from the doctor was a talk about formula. Adam’s growth has been leveling out some, and the doctor made me feel guilty about that. I wanted some suggestions on how to proceed with solids with him, but the GI totally passed the buck to the allergist. I left there in tears feeling inadequate and frustrated.
I called Adam’s pediatrician that afternoon, and thankfully he made me feel much better about the situation. He said that I didn’t need to rush out and order formula (he’d have to be put on Neocate, a mucho expensive amino acid formula). He suggested that we run some blood tests just to make sure Adam’s nutrition level, iron levels, and basic blood chemistry looked ok. He also added tests to rule out the Diabetes Insipidus now that Adam’s weight is plateauing some. He said as long as all of that came back ok then I should just keep breastfeeding Adam without supplementing and keep working on getting him on solids.
We took him to the hospital to get his blood drawn on Tuesday, so they could run all of those tests. That was not fun, as they actually had to draw blood from the tiny vein in his arm.
We got the results back this week from all of the tests but one, and they were all normal. He’s showing no signs of DI, and his electrolytes, white blood cells count, hemoglobin levels, and a myriad of other things all look good. We should get the result back of the one last test that had to be sent out next week sometime. I’m also going to be bringing Adam in for a weight check in a week just to make sure we’re ok there.
Thankfully in addition to the good test results, we’ve also been able to figure out the tummy stuff. It turns out that he’s been reacting to chicken. We’re also pretty sure that he’s been reacting to something in the chili I’ve been eating, either the beans or tomatoes. I retrialed the chicken and had a big confirmation but have not retrialed beans or tomatoes yet. We feel that it’s more important to start working on solids again than trying to figure that one out, so all three are on the forbidden list for now. Obviously that cuts into my diet a lot, especially now that the only meat I can eat is pork, but what ya gonna do.
The really good news is now that I’ve taken all of those out of my diet, he’s doing so much better. So much so that we’ve started him on some rice cereal and are keeping our fingers crossed that things go ok.
Adam had yet another doctor’s appointment on Tuesday to see the specialist that he sees for his torticollis and plagio, and he’s officially graduated! He still has a slight tilt, but it should improve as he gets stronger now that he’s more mobile.
Adam also started cruising last weekend, and that’s fun to watch. He also learned the art of throwing a temper tantrum, the little goober. And he waved goodbye for the first time today. He’s just learning new stuff all the time.
Giving Thanks November 21, 2007
It’s easy to figure out what I’m most thankful for this year. It’s getting to look at this face every day.
And getting to have moments like this every day.
Words can’t even begin to express how thankful I am to have Adam in my life. The gratitude I feel because I am able to call myself Adam’s mom is immeasurable.
I hope everyone has a very happy Thanksgiving. I know that despite the fact that I won’t be able to eat a single bite of Thanksgiving dinner that I’ll be having a wonderful holiday with our little guy by my side.
10 Months and Some Change November 13, 2007
Adam turned 10 months on Saturday. The big news of the week comes on the helmet front. His helmet had been getting really tight, so I brought him in yesterday to see if it could be adjusted. The orthotist said that he was just outgrowing it, that nothing really could be done. Our next head scan was scheduled for the 21st, but he asked if I wanted to go ahead and get one done while we were there.
We did, and it turns out that Adam’s asymmetry measurement was down to 4.9mm, so we’re done with the helmet! That’s really amazing progress from where we started at 16.5mm. It really is nice to see his cute little head again. I don’t think any of us are going to miss that piece of plastic one bit.
Adam is unfortunately still having tummy problems. When I took him back to the pediatrician, he ran some tests to check for bacteria, parasites, salmonella, and the like, and they all came back normal. We’re going on 6 weeks of this stuff, and it’s getting old fast. Things are a little better than they were in the beginning, but we’re definitely not back to normal yet. I went ahead and made an appointment with the pediatric GI, because I really don’t know what else to do at this point. Their first opening was on the 26th, so if he’s not better by then I’ll be bringing him in.
Adam’s pediatrician recommended that we might try giving him some solids based on his theory that it may allow the missing enzymes causing his “slick gut” to come back a little faster, so we nervously made another attempt at solid food, this time with applesauce. I wish I could say that things went well, but it just made things worse. He definitely reacted to the applesauce in a significant way, so we’ve stopped giving it to him.
It’s pretty disappointing to have another failed attempt at solids under our belt. As much as I love breastfeeding him, it really can be a lot of pressure to be his sole source of nutrition at this age. Plus, I really just want his little tummy to be better. It’s hard when there is no real end in sight to all of this.
The tummy stuff combined with the fact that he seems to be on a teething spree has not allowed much improvement on the sleep front. He’s only rarely going more than 2 hours at a stretch, and sometimes I long for the 2 hour stretch. I understand now why they use sleep deprivation as a form of torture.
Despite it all, he’s making great strides. It’s so much fun to watch him learn new things all the time. Even when I’m so tired I can’t think straight and so frustrated with the GI issues that it makes my head spin, that little face can still make me smile in no time flat.
I’ve Been a Bad Blogger October 31, 2007
I know. I suck. Things have just been a little crazy around here, that’s all.
Mostly it’s been the nonstop poop-a-thon that’s been keeping me busy. Yeah, I normally don’t blog about poop, because well, it’s poop. It’s not like I haven’t had the material with all of the food intolerance stuff, but it’s just not that great of a blog topic. However, the day after Adam’s MRI things went downhill in the poop department in a bad way. He’s averaging 7-10 times a day. Every day. And it’s green. Yeah, not good.
It really sucks, because he had been doing so well in the GI department lately until this. We were even going to attempt solids again. Now that’s obviously going to have to wait until he recovers from whatever is going on right now.
He had his rescheduled 9 month check up on the 19th, and that was my first order of business with the doctor. The pediatrician said he looked fine and that it was probably a virus that could last up to 3 weeks. If he wasn’t better at the 3 week mark, bring him back. Well, it looks like we’ll be heading back to the doctor on Friday unless a miracle occurs between now and then.
The good news from his check up was that the ped said not to worry about the Diabetes insipidus marker, because he would be showing symptoms if he had it. Babies with DI are failure to thrive babies, and Adam definitely doesn’t fit that bill at 29″ tall and 20 lbs, 7 oz. So, that’s a relief.
We’ve had some really good news on the helmet front, too. A week ago Adam had another head scan done. His asymmetry measurement went from 11.9mm at the previous scan (and from 16.5mm at the beginning) to 7.4mm! What a difference going to the second helmet has made. We’ve seen the same amount of correction in the first 3 weeks he’s worn the second one as the entire 8 weeks he wore the first one. His next head scan is scheduled for 3 weeks from today, and then he should be done. It will be so nice to be all finished by the holidays.
His crazy eye is still crazy. I talked to his ophthalmologist shortly after his MRI was done, and we went over the possible causes/types of nystagmus now that a tumor has been ruled out:
1) Spasmus nutans. This is the benign form that will resolve on its own usually around the age of 3-4. There are no vision problems or other major effects from this type, although some kids will develop a head bob in response to the nystagmus.
2) Congenital motor nystagmus. This one usually doesn’t result in major vision problems either, but it doesn’t go away. It’s just something that will stay for life. Some kids will develop a strange head position in response to it that can be corrected surgically (the postion, not the nystagmus).
2) Retinal problems. There are several types that could fall under this category, and this is where the major vision problems occur. Obviously we hope he doesn’t have this kind.
The ERT test can be done to help rule out retinal problems, but there’s only one place that does it in Houston and the anesthesia that’s used there isn’t great for babies. Since there’s no treatment for it anyway, it doesn’t make sense to put him through that right now.
Once he’s 2 or 3 years old he’ll be able to have a sit lamp exam done by the eye doctor which will give us a lot more info on his vision and on what the retinas, optic nerves, etc look like. The ped ophthalmologist wants to see us back in 3-4 months, but we’re basically taking a wait and see approach as long as he doesn’t develop any new problems.
The sleep issues continue now with added fun from the poop-a-thon. The fact that he seems to be one of the slowest teethers in history doesn’t help either. Tooth #4 is taking its dear sweet time coming in, and it’s driving Adam crazy. The helmet doesn’t help matters either. I have to laugh (it’s either that or cry) when I hear people complaining about their child waking up once or twice overnight. Adam woke up 6 times last night. Yeah, I’m a zombie.
So, I guess that’s the long and the short of it these days. Adam is a crawling fool and doesn’t like to stay in one spot for long. It’s so fun to watch him develop new skills. He’s big into pulling up now, too.
Now if we could just get what ever is going on with his tummy under control and have this tooth come in we’d be in pretty good shape. Oh, and more than a couple of consecutive hours of sleep every now and then couldn’t hurt either.
Sometimes It’s Good to be Unremarkable October 15, 2007
We got Adam’s MRI results a little while ago. I happen to think he’s a pretty remarkable little guy, but according to the report he has an unremarkable brain. His eyes appeared normal as well. I am so incredibly thankful to be able to exhale.
Of course it wouldn’t be us if the report ended there. Apparently he has a “lack of normal T1 shortening in the posterior pituitary gland” which can be a marker for a disease called Diabetes insipidus, not to be confused with Diabetes mellitus, the blood sugar one. I haven’t had the chance to consult Dr. Google much yet, but it has to do with the kidneys inability to concentrate urine. Obviously we have a lot more questions than answers right now about this, and we don’t even know what the chances of him having it are. Adam has his rescheduled 9 month checkup on Friday, so I’ll definitely be discussing it with his pediatrician.
We’re so relieved to know that there’s not a tumor causing Adam’s nystagmus. We’re waiting to find out when the pediatric ophthalmologist wants to see us back so we can figure out where to go from here, but it’s just such great news to cross off tumor from the list of possibilities.
Now if Adam could just recover from the post MRI effects. He’s either having a reaction to something they gave him on Friday or he managed to pick up a virus while at the hospital. Either way, he’s been having a rough go of things, and we’re going through diapers like you wouldn’t believe. Hopefully whatever this is runs its course soon so he can get back to feeling better again.
older posts »