So Proud...

Jacoby had his growth hormone stimulation test this week. I'm very happy to report that he did exceptionally well throughout the entire ordeal. Getting the IV was the most stressful, especially when they couldn't get it on the first try. But once that was taken care of, Jacoby turned our small lab room into a place of his own with trucks, books, and videos. He carried on throughout the hours with hardly any complaint, retained a good sense of humor, stood by himself to have an xray of his hand, delighted his nurse and was very helpful to her when she visited every 30 minutes to draw blood from his special "button". I couldn't have wished it to go any better and both Justin and I were very proud of him. Once the four hours were finally up, Jacoby ate lunch there (and proceeded to eat all afternoon) and then fell asleep as soon as we started our trek back home. We were all worn out by the end of the day, but so thankful and relieved to have this behind us.

We won't have any results for another 10-14 days, but what we did find out is that he doesn't seem to have any blood sugar issues. His last lab results indicated low blood sugar, and a lot of factors could have played into this, but they wanted to check to make sure he was keeping normal blood sugar levels and he was! Next steps will be to have blood work done on April 29 and then a follow up appointment with the allergist on May 6.

The boys are doing great! Morgan's main project these days is figuring out how to eat with utensils...and sheesh it's a messy process! But he is so determined and actually getting quite good at it. Jacoby has begun the "But why, Mommy?" questions...I was thinking I might have another year or two before this started. He's also completely enamored with a new special garbage truck that Grandpa Michael gave him last weekend, complete with garbage bins that he has filled with all sorts of things.

Justin is busy working on his dissertation proposal. I'm trying to get him to send it out to everyone, well not everyone, but our families at least so they can see what he's going to be writing on because I think it's quite interesting. His TA responsibilities are keeping him really busy too.

We really had a good time with Grandmanette and Grandpa Michael last weekend. We enjoyed beautiful, sunny weather while they were here. The boys loved their company, and Jacoby was thrilled to be able to try out Grandpa's new iPad. Aunt Linda arrived on Tuesday from Arizona in her great big motorhome, so we've been enjoying her company in the evenings. Jacoby keeps her busy with books and trucks. Morgan is pretending to be shy and have stranger fear.

I'm trying to keep my head above water--I can't believe how much time and energy the medical stuff takes! I'm so far behind with things at home, not to mention the board meeting coming up in less than a month...insert reminder to breathe here. So I just keep trekking along. I had jury duty for a few hours this week and then thankfully got excused. We were very saddened at work when we got news last week that the spouse of a colleague passed away after a long fight with cancer, so several of us attended his memorial service. I also received a call from the manager of all of the Boulder Medical Center labs wanting to hear more about our unpleasant experience with Jacoby's first blood draw, so I had a very good conversation with her. We're looking forward to trying out a different lab next week that might be slightly more kid-friendly.

The boys' school did a lot of special things this week in honor of Earth Day yesterday, planting a new tree out by the new playground, learning how things grow and how we can take care of the earth. In Jacoby's class, they asked each child what they wanted to do to take care of our environment and Jacoby told his class that he was going to keep using his water bottle for drinking! I think we're going to plant some strawberries this weekend to continue the conversation.

Have a great weekend everyone!

A really great weekend...

The boys and I had a great weekend and spent lots of time outside, at the library, reading, and playing. They're so much fun and I love them to pieces! We talked a lot about springtime, so we checked on our tulips quite a bit and Jacoby valiantly tried to catch a ladybug, but the ladybug decided it had better things to do than be harassed by a 3 year old. Morgan is talking and working hard at navigating all of the terrain in the backyard. The highlight was getting our sand and water table out. I think digging and shoveling are going to be the theme of our spring and summer!

Justin had a good trip to Nebraska, his session went well, and he was able to spend some time with several of his buddies from the program. He made it home safe and sound this morning and the boys were glad to see him.

Besides a couple of projects with Jacoby, I didn't do much of anything this weekend besides hangout with my munchkins. I made myself relax in the evenings with a couple of girly movies and Ben & Jerry's ice cream...no planning, no organizing, no thinking about food, meals, or groceries, etc. It was great!

We're ready for a new week and all that it will hold. Thankfully, we've got a break from medical appointments and are looking forward to a visit from Grandmanette and Grandpa Michael!

Have a great week everyone!

Hope and Sunshine from a Lunch Box

It has been a whirlwind week, so I wanted to post a quick update on everything that has been going on. I talked with our pediatrician Monday morning about Jacoby's low growth hormone levels that showed up in his lab work. She referred us to a pediatric endocrinologist, and I was able to get an appointment for April 26.

Meanwhile, the boys started their new school schedule this week: Tu-We-Th. The hope is to give Justin more time to study for comps and get started on the dissertation phase. Morgan seems to love this and has earned quite a reputation as the class-climber. This was also the first week that we started bringing Jacoby's meals to school. I think everyone was a little bit nervous how this would go, but as it turns out, it's been an unsual bright spot in our week! Jacoby seems to love it and all of the teachers have really jumped on board in helping us with Jacoby's new diet and they provide great detailed notes for me about how much he ate, etc. since they know I'm keeping a food diary. And they have also reported that Jacoby is showing a lot more energy and engagement in the class. For the past 6 weeks, there has been concern about Jacoby not participating in the class and kind of keeping to himself. It seems that between his new diet and having his own food at school (I've suspected that he might be worried about eating the food at school and that it might be effecting him in the class), he's already turned a small corner. He's usually one of the first ones to arrive and when I leave, he's busy helping them fill water bottles or feeding the fish.

On Tuesday, we found out that an earlier appointment opened up with the endochrinologist so yesterday Jacoby and I made the long trek down to the furthest southern regions of Denver for our first appointment. The doctor took a detailed family and medical history on Jacoby and also did a physical exam. He wanted to know a lot about mine and Justin's growth patterns from long ago when we were growing up. In the end, he felt like Jacoby was quite healthy and that his weight was excellent which was great news because that seems to indicate that despite all of the allergies he's getting the nutrition he needs to stay healthy. We were presented with two options: proceed with the growth hormone stimulation test now or wait 6 months to see if Jacoby grows at least an inch and then decide if we need the test. After more discussion the endocrinologist felt like we would probably end up doing the test one way or the other, because even if Jacoby is a late bloomer, he should still have normal levels of growth hormone (his was at 29, normal is 75-100 for his age). So, we're going ahead with the test on April 21.

There's a lot more information about the practice and the procedure here: http://www.denverpedendo.com/index.html . The growth hormone stimulation test is a 4-hour procedure where they'll insert an IV and then draw blood every 30 minutes to measure hormones, blood sugar, and I'm sure a host of other things. We met the technician who will be helping us with this, and I could tell she'd done this lots of times with little ones. We get to bring videos and all sorts of activities to keep us busy. Unfortunately, he has to be fasting from midnight until the test is finished, but I think he'll be fine and he'll only get poked once (important details for Mommy to know of course). The results from the test will tell us if Jacoby needs to be supplemented with growth hormone for awhile in order to help him reach his adult height (which they predict to be between 6' and 6'4''!). Growth hormone is very safe with minimal side effects, and the doctor felt like this would be no problem to treat.

So, between the success of home lunches/snacks at school (who knew this would be a small area of hope!), the news that his weight is good and he's absorbing food, and the doctor's confidence that our growth issues could easily be treated, I finally feel a little bit of the weight being lifted. I've really been amazed by the ways Jacoby's teachers have rallied around us and the care and concern they've shown for him. We're so thankful to have them as part of the boys' life.

Today's my last day in the office for the week, and then I'm off to have a Mommy & Boys weekend. Justin leaves on the train tonight for Omaha, NE where he'll be presenting a paper at the SBL regional conference. We're looking forward to a few art projects, getting the sand and water table set up for the season, a picnic, and lots of others adventures!

Easter

We celebrated Easter today by attending a nice service at church, had fun with a small Easter egg hunt at home (our hypoallergenic Easter eggs were filled with jelly beans and marshmellows), ate monkey bread, and spent a lot of time outside enjoying our beautiful spring weather.

The boys are both doing great. Morgan is really progressing with his language skills and adds new words to his vocabulary each week. We're really being intent with his words and what he's trying to communicate because, and this will probably not surprise any of you, he's recently decided to test out temper tantrums as a form of communication when we're just not getting it. And he's only had a couple of incidents of this behavior, but it took a couple of them before I realized what was going on since we're not very experienced with these (Jacoby didn't go down this road). During one of the incidents when Morgan was inconsolable, throwing his head around, etc. I decided to put him down and carry about my business while he worked out whatever the problem was. The child stopped crying, crawled all the way upstairs to find me, and then proceeded to throw himself down on the floor and start crying again. And that's when the light went off for me. So, needless to say, we're caught up on our reading about tantrums and are working hard to ward them off. He's doing great at school and has recently started sleeping on a mat like a big kid instead of in a crib! He and his classmates are big enough now to enjoy circle time with singing, stories, and they're already learning their ABCs. He's a very happy camper when I pick him up, which does his Mommy's heart good.

Jacoby is very busy with imaginative play. I think I could probably pack up most of our toys and he wouldn't notice since he's so involved with the scenarios in his imagination. The coat closet is typically a garbage truck or a fire truck, depending on the moment. Our railing is a pole he slides down when there's an emergency, and you wouldn't believe the kind of fires he keeps having to put out all around the house! Good thing we've got a very attentive fireman to keep us safe! He's always interested in doing an art project, so I try and schedule one or two of these in to our routine each week. I showed him how to hold a pencil the correct way a week ago or so, and he was very intent on mastering this skill. I've caught him a couple of times holding crayons or markers the right way and he talks a lot about the letters he's drawing when we're coloring. We've pretty well exhausted the truck section at the library, so now we're into the animals and we're learning about mammals this week.

Justin is busy with his last quarter of the school year. He's in a dissertation seminar and working hard on a topical analysis and dissertation proposal. He was recently tempted by a job opportunity in Amsterdam that one of his professors shared with him and even said that she'd write him a recommendation for it. I think that it would be very tempting if he was just a bit further along and we weren't on the brink of some serious medical issues with one of our kiddos.

I spent most of the weekend in the kitchen cleaning out our cuphoards and refrigerator, researching alternatives for our new diet, and preparing some things for the upcoming week. I've got a list going of brands that are friendly for our diet and a list of those who are not. It's definitely been a time and energy-consuming process. Our kitchen is becoming made-from-scratch central! News about Jacoby came very close to the Easter weekend, and I'm sure I'll find some meaning in that a few months down the road but I'm not quite there yet. I just focused on hugging him a little longer (whenever I could catch him) instead.

Easter 2010

What a difference a year can make!

Challenges

I spoke with our allergist today about Jacoby's lab work. On the food allergy side, it confirmed that he's definitely allergic to the things that we already know about (nuts, peanuts, eggs, seeds) but also showed that he's allergic or at least sensitive to soy, coconut (even though the skin test came out negative on this one), and oats. It also showed that he might have a slight wheat allergy.

For the concerns we have about his growth, the results showed that he has low levels of growth hormone. The allergist and our pediatrician were going to discuss this and determine if we need to see a pediatric endocrinologist. He also has high levels of eosinophils in his blood count which could indicate eosinophilic esophagitis, a gastrointestinal disorder that can occur as a result of or in conjunction with food allergies. He's not presenting with the typical symptoms of EE, so we're going to put him on a pretty strict diet, keep a food diary, watch for certain symptoms, and then have his blood tested again in about a month. They don't diagnose EE unless they can do an endoscopy and take biopsies, and since that's pretty invasive our allergist wants to watch things closely for another month before we make the decision to do the procedure.

So, that's the latest. I think we're going to start sending Jacoby to school with his own food since we're way past the point now of being able to expect the school to manage all of this for us. The low growth hormone and EE are both very treatable, but I feel like we still have some missing pieces to the puzzle to figure out before we can get hopeful about our course of treatment.

I can't really put into words what it's like to have something wrong with one of the most precious little people in your life, something that I can't see and can't fix. We have tons to be thankful for--all of this is being caught very early, our medical team in Boulder is amazing, he's otherwise healthy in all other areas, etc. etc. I know all of that in my head but processing it all in the heart is a completely different story.