And We're Off - Galactosemia Conference Bound

Atlanta here we come! An adventure for Galacto Girl (and her mama and dad) to be sure. The Galactosemia conference,  which is held every two years, kicks-off Thursday evening and continues through Saturday.

The first time I learned about the conference was three days after Francesca was born. I was feverishly searching for answers about this rare and terrifying diagnosis and found all kinds of information about the conference, which was underway in Florida. Soon after we decided that spending her birthday at the conference every other year would be a cool tradition (and get mama out of  a birthday party). :)

While I am excited about the conference, I am mentally preparing myself for a couple of emotional days and information overload. At the last conference they announced several updates to the dietary guidelines. By the time we received the dietary guidelines book, a few weeks after Francesca was born, it was already out of date. They were now allowing legumes, hummus and even certain aged cheeses! I'm looking forward to learning the latest and greatest about the research findings. But I also know there might be information that's difficult to hear. We'll be meeting many individuals with Galactosemia which could include a range of complications. With not knowing how this condition will impact FJ long-term, I'm not sure if meeting others will be encouraging or discouraging, but I anticipate a little of both.

The conference offers a variety of break-out sessions. Chris will be going to the more "science behind the condition" sessions and I will be attending the ones geared towards managing the condition and possible side effects.

Now the question is - will I regret our decision to drive instead of fly? So far so good - but we're only three hours into our multiple day drive. Ask me on Thursday afternoon and I might have different feelings.

Galacto Girl Goes to Day Care: Week 1 Recap

We're 10ish hours away from week two of day care and I don't feel any better than I did last week. I might be dreading it more. Week one was not good...and that's putting it mildly.

When I dropped Francesca off on Monday she was very clingy, as to be expected. We put on her Dairy: I CAN'T EVEN! shirt that Shelby made and I went over the menu with her teacher. Once she started playing I slipped out.  

I got teary eyed on my drive to work but was feeling okay. We have access to a live camera feed so I could check-in throughout the day. I was quite surprised to find out that nap time was just a bunch of mattresses scattered across the room. I laughed out loud thinking there was NO WAY my kid was just going to lay down and go to sleep. Watching the poor teacher get four (maybe five) kids to sleep was painful to watch. She would have had better luck herding cats. She would get one kid asleep (or so it appeared) and move on to the next, only to have the last kid come over and interrupt the progress she was making. Like I said, painful (and a tish entertaining). But, miracles do happen and FJ fell asleep! 

I noticed later in the day that Francesca was carrying her blanket EVERYWHERE. Great, my kid is Linus from Peanuts. Not only that, she went on a hunger strike. When I picked her up I found out she didn't eat anything but a few crackers, all day. When we got home she refused to eat dinner and just sat on my lap and watched TV, clearly exhausted. This is the time of night when she was usually running circles around the living room. 

About 9:30 p.m. she started fussing. I wasn't going to check on her at first but changed my mind...thank God. I went upstairs and she was laying on her back throwing up and choking. It was terrifying, to say the least. After a quick bath she went back to sleep but that's when the panic really set in for us. Our first thought...she had eaten something with dairy. I knew she hadn't really eaten so could she have grabbed someone else's cup with dairy milk instead of her almond milk? It seemed feasible and since she had never thrown up before, I didn't know what else to think. 

I called Tuesday morning and her teacher assured me that she didn't have any dairy. Miss Heather sat next to her at breakfast and lunch time. Francesca was acting fine when she woke up so we decided maybe it was just nerves from the new situation and not eating and took her for day two. When I picked her up they said she had been sad in the morning but was much better after her nap. And she ate! Small victories. The note summarizing her day said she had been "talkative", so that was a good sign. Every time I looked at the video she was carrying around her blankie though. Linus, for real. 

Tuesday night was seemingly better. She was still much more tired than usual but she did eat her dinner. A little after 6 a.m. on Wednesday morning she threw up again. Thankfully we had a doctor's appointment already scheduled to make sure her ear infection was cleared up. The doctor assured me there was a lot going around and recommended not going crazy about the dairy. I couldn't help but think it was weird that it was only happening while she was sleeping and only one time each night but again she said that was pretty normal with kids that either just get a slight case or are at the end of an illness. I tried to not worry but all I could think was she was a stress puker and she was not adjusting well to day care. And the fear of her consuming dairy was still nagging at me. I cried the entire drive to work. I hated that I didn't know what was causing her to be sick and couldn't help but wonder if this would be the rest of our lives every time she got sick. What was the cause...stress? dairy? the flu? 

Wednesday she was with Grandma and Grandpa and we made it through the night without puking. I think I was equal parts relieved and worried. Relieved that we made it through the night, worried that it was the stress of day care and that she would end up throwing up Friday night. But we didn't make it that far because Thursday night it happened again...and it was the worst yet. Poor kiddo. Grandma volunteered to come over Friday so not only no day care but FJ could also spend a day at home. When I called the day care to let them know Francesca was sick they asked what her symptoms were. Turns out there had been a lot of kids out with the flu. So again a combination of relief/worry. Relieved it wasn't dairy-related, frustrated that our first week of day care and she gets sick. This was one of my major negatives on my pro/con list of day care vs. in-home care. I mean, I know sickness happens but THE FIRST WEEK?! 

So...it was a long and stressful week filled with not a whole lot of sleep and more than enough worry. Although she hasn't gotten sick since Thursday night she still isn't her usual happy self - she's not eating and has been extra clingy all weekend. I'm a little on edge about her going back tomorrow with how she acted this weekend but I know it's inevitable.

All I can do is hope by Friday we will have made it through illness free and a little more adjusted to the new routine. I mean, the first week set the bar pretty low...things can only go up from here, right?!

Galacto Girl Goes To Day Care

I am long overdue in an update on our Galacto Girl, I know. I had good intentions of posting a 1 year update. How are we over halfway to 2 years?? Then I was going to wait until our appointment at the Metabolic Clinic on Wednesday, but since I have a topic on my mind, here we go.

Two weeks ago I got a text from our babysitter saying she had taken a full-time job at a day care. I felt a lot of emotions...but mostly dread. I dreaded the thought of finding another babysitter and teaching them the ropes, knowing we would most likely continue to have turnover since it isn't a full-time position. I posted the job on Care.com but started wondering if it was time for day care. As much as I love the security and flexibility of in-home care, we knew FJ would enjoy and benefit from going to day care. When Shelby told me where she was going I began looking into it. I was very impressed from the website... I actually figured it would be out of our price range. Thankfully, that wasn't the case. The rooms are separated by age and filled with age-appropriate learning toys. FJ's room already does some circle time and has a routine. 

So, after 16 months of our Galacto Girl being cared for in our home by a babysitter who knows what is safe for her to eat, we are venturing out into the big scary dairy-filled world (aka: daycare). I'm terrified but excited for her to have daily interaction with other kids. We took a tour on Friday and discussed her dietary restrictions with the Assistant Director. Today I talked to the Director and she actually checked food labels for me so we could determine what FJ will be able to eat there and when we will have to bring substitutions. 

I still have a lot of questions but I am feeling better about it. Most of the time. Come next Monday I feel like I will be more of a wreck than I was when I returned to work after maternity leave.

Then I remind myself that she's going to have to go out into the big scary dairy-filled world someday. I need to trust that armed with the correct information babysitters, caregivers, parents and teachers will keep my child safe and healthy. You can bet I will be printing out and taking Galactosemia information, ingredients she can and can't have and explain FJ's condition and the importance of avoiding dairy to every employee in the day care. And then I will have to take a deep breath and trust (and probably offer gentle reminders on a regular basis). :)

As for FJ, she's thriving. She talks non-stop and imitates everything (which is a tad terrifying for mama and her sometimes questionable language). We'll be going to Detroit to see the specialist on Wednesday. They will take her GAL1P which determines the amount of the galactose in her blood stream. They say lower is better and want it under 4 (it was 2.9 last appointment) but we also know that low levels don't necessarily mean a challenge-free future. I expect the doctor will comment on how great she's doing but caution that many of the delays won't show up until preschool age. It's always a long, emotionally draining day, but not nearly as scary and overwhelming as our first trip - and for that I'm grateful.