Galacto Girl Goes To Preschool

Galacto Girl Goes to Preschool? Well that doesn't seem right. Didn't I just do a blog post a couple months ago about Galacto Girl going to daycare? Oh that was a year and a half ago? Alrighty then...

So, September 5 Francesca had her first day of all-day Preschool. It was less than two weeks after we decided to see if it was even a possibility.

Chris and I had talked in passing a couple times about the fact that we should look into it. But it wasn't until less than two weeks before school started that I made the call. It was mostly prompted by my frustration and discomfort with daycare. While they have been wonderful to FJ and good about her dietary restrictions - there had been a lot of turnover with both the teachers in the rooms and the director and assistant director. I understand that turnover happens, but it felt like all the people who were there when FJ started - the people who really loved her and were aware of the Galactosemia were gone. And it was exhausting and worrisome wondering if the new teachers were up to speed and if the directors really understood the condition. So, it was a combination of that and the fact that I knew she was getting attached to her friends at daycare and it would be harder for her to leave in another year - I made the call.

They returned my call on Monday and said because they had just had a family withdrawal - they had one open spot. Sure felt like a "God thing." And that was just the first of many. We arranged for Chris to pick up the necessary paperwork and when he was at the school to pick up the paperwork the teacher was there. He was able to talk to her and explain FJ's Galactosemia. Then a couple days later my mom took Francesca for a walk to play at the park and see where she would be going to school. As they were reading the sign on the door a woman came to the door and asked if they needed anything. My mom explained Francesca was going to be starting Preschool there. It was Francesca's teacher - so she was able to meet her.

The only person who wasn't going to meet the teacher before school was mama. I was going to be out of town for work for a few days. During that time Chris would take FJ to the orientation and have a one-on-one meeting with the teacher. I struggled with a lot of mom guilt, but I had work commitments and I knew I would be there for the first day of school, which was the most important thing. 

The night before she started school I began to panic. I wanted to make sure they had information that explained FJ's condition. There were a few "teachers' guides" and other information online but most of them were for kids who had known delays, which she doesn't at this time, or very complex info. So it was a late night - but I created an overview document that explained the condition, FJ's journey, delays we were watching for, restricted foods and then a page of approved and not approved snacks, based on their calendar. Lunches wouldn't be a problem because she would bring her own lunch but some of the snacks were definitely off limits, so I made sure to cross off everything FJ couldn't eat and highlight the items she could, on the monthly calendar.

Francesca was super excited to start preschool. She would be going on Monday, Tuesday and Friday

all day (8:30-3:30) and then to after care until 6. She would still go to my parents' house on Wednesday and Thursday. We explained that she wouldn't be going to daycare anymore but she would have new teachers and meet new friends. She told us on several occasions that she was excited but "might be a little scared." Me too baby, me too. The first day drop off went very well. Francesca didn't cry at all...and mama mostly held it together. I worked from home that day and at 3:45 we got an email from her teacher with the subject "accident". Turns out our potty trained girl had pooped her pants during rest time...and she was wide awake.

Okay...probably just nerves and the new routine. Right? Got another email on Friday the first week - Madame Poops Her Pants had made a return - pooping her pants during rest time. What in the actual?! I was really afraid we were going to get kicked out. We talked about it with her and reminded her she needed to tell her teacher or an assistant when she had to go potty, she said she understood. LIAR LIAR PANTS ON FIRE (and full of poop). So, on Monday I refresh my email about every 3 seconds around the time we would get the poop alert - and finally we do - to let us know that she didn't have an accident. WOOT! I remember how when she was little and was constipated we would joke about a "poop party" when she finally went. I didn't ever think I would be having a "no poop party" when she was three. But, here I was - damn near ready to throw her a party for not pooping her pants.

But then Tuesday came. This was a little different because we didn't get an email from the teacher about it, in fact Chris did get one that said she didn't have an accident. But when I went to pick her up she was in different pants and I had a suspect stinky plastic bag to take home. Gagsville. So, I ask FJ when she pooped her pants. "I didn't poop my pants!" was the reply. "Well, I have a stinky bag of your clothes and some poop marks that tell me different." "NO MAMA, I DIDN'T POOP MY PANTS" - great Madame Poops Her Pants is now also a big fat (and angry) liar.

When she went back on Friday (today) I didn't have high hopes, mostly because I knew she hadn't pooped since Tuesday. And I was right...another email about her pooping her pants during rest time. NOW I'M PANICKING - it's week two and there is no improvement. How long can I keep telling myself that it is because of the new routine?! And although I don't remember seeing anything about kids needing to be potty trained, I know that is usually a preschool prerequisite. So, I reply to the teacher and pretty much apologize and ask if she's going to get kicked out. A response comes a few hours later - she has some ideas for what they can try over the next couple weeks and no, she's not going to be kicked out. SHOOOO - a huge sigh of relief for this mama. Her teacher mentioned maybe she doesn't like going with all the other kids in the bathroom - which hadn't really dawned on me but Chris noted that the bathroom at daycare was only a single stall, she didn't have to worry about others being there. Maybe that's the issue. So the teacher is going to wait until all the kids are down for rest time and then take her and see if that makes a difference.

I have to be honest. I've said a lot of prayers in my life - but I never expected to beg God to help my child not poop her pants. But here we are...on the third night (or more) of that prayer. And this is a doozy of one for him to take His time answering. I'm hoping next week is better and sooo thankful her teacher has been wonderful and understanding.

Overall the communication with the teacher has been amazing. Aside from the "your kid pooped herself again" emails, she also let us know a couple times when snack changed and Francesca was able to have it - or an email to tell us on the days when she couldn't have snack, what they substituted based on the allowed/not allowed list I provided them. It has all been very reassuring.

So next week will be week three. Really hoping it will be a poop-in-the-toilet-not-in-your-pants kind of week, but only time will tell. In the meantime, if anyone has any tips to help Madame Poops Her Pants, I'll take them. Also, I can't wait to show her this blog on her high school graduation. Unless she's still pooping her pants, then it won't be so funny.

A Letter to Myself - July 15, 2014

This is the time of year when Timehop and On This Day Facebook memories and pictures bring back the sadness, fear and uncertainty we experienced three years ago. We still face uncertainties including possible learning disabilities (yes, I know she's doing great now - but the galactose will continue to build up in her body and and could still cause long term challenges) and premature ovarian failure, among other things. But we have an amazing kiddo that I wouldn't change for anything - including her Galactosemia diagnosis. As Francesca's birthday approached I kept thinking of things I would have loved to know three years ago. So, I wrote a letter to my July 15, 2014 self.

Dear Me,

Things are about to get really scary. When your skin-to-skin time is cut short, it will be just the beginning. You will question if you'll ever bring your daughter home. You will feel incredible guilt
when you return to the nursery after breastfeeding Francesca only to find out  the very thing you thought was sustaining her would kill her. You will think you want to go home for a night only to make your husband turn around and take you back to the hospital because you would rather spend the night sharing a room with a stranger (divided only by a curtain) than spend the night at home, away from your baby. You will experience an emotional roller coaster that will include times of peace and hope and times of extreme sadness, fear and anxiety. But know this, your baby will be okay, you will be okay.

Don't push your friends away. There are a lot of people who love you. And you need them. Reach out, ask for their prayers, cry with them. Let them come visit. After spending a couple days not talking to anyone about the situation - you will feel so much relief when your best friend comes to meet Francesca and you get away for a couple hours. People you haven't talked to in years will reach out to offer prayers and provide support. It will help. You will still remember who they were and be grateful 3 years later.

Be wary of what you read on the Internet. You will read A LOT. And most of it will be really scary - because it is worst case scenario. You will find good things too; A blog about two healthy girls with the condition, a Facebook group full of supportive people who have been in your shoes and will offer advice and support, and information about the conference that happens every two years (and is actually taking place in Florida while you are scouring the Internet for information about the condition). But there will also be out of date information, including dietary guidelines. And there will be conflicting information. And there will be a lot about worst case scenarios - read it, know it is a possibility and then move on. It could happen, it doesn't mean it will.

Be prepared for information overload. You will be terrified and anxious leading up to the specialist appointment. At the appointment you will meet with several different people who will provide so much information you will feel like your head will explode and you will never remember everyone and everything. You will leave feeling exhausted and overwhelmed. You will cry all the way home and not want to talk to anyone. Your husband will hold your hand and share in your grief. These appointments will not always be this way but your husband will continue to be your rock - strong when you are weak, positive when you are negative, patient when you are not. You will make a great team. (I realized as I'm typing this that I probably don't tell him that enough. Thank you, Chris! xoxo)

You will learn more than you thought possible during the first year. The first time you go to buy baby cereal you will call the dietitian in the aisle of Kroger to make sure it is safe because there are a couple ingredients you won't be sure about. You will be near tears because you're overwhelmed and think you'll never figure it out. And this will not be the last time - you'll put all of the dietitians phone numbers (3 to be exact) in your phone and will call them frequently as your child ages and is introduced to new foods. But, you will learn a lot - quickly. By the time she is two you will be able to easily read a label and spot unsafe ingredients. You will learn that the allergy statement is the first place to start and what to look for - but also know to read the ingredients, just in case.

Stay positive and pray. This child is the best thing you have ever made. Enjoy her. Don't spend your life worrying. Nothing good comes from worrying about something that might never happen. And if it does happen, it won't help to have wasted days, months or years worrying about it. You will have good days and bad days, days filled with anxiety but more filled with hope and joy. Pray. Know that even when the future seems scary and uncertain for you, it is not for God. He's got this. Remember, Francesca is a child of God, and He doesn't make mistakes. She is exactly who He meant for her to be. Find peace in that and walk by faith.

Love,
Me

p.s. I might also include - you're not going to completely change your diet, removing all dairy, and get super skinny like you might think. You will make simple substitutes (dairy free butter, bread, marinades, etc.) when they are available, but for the most part you will put the cheese and other dairy ingredients on the side and teach Francesca from an early age what she can and cannot have and to ask if something is "safe" for her, before she eats it.

Celebrating Galacto Girl on Rare Disease Day, and Every Day

It's Rare Disease Day - the perfect time to give an update and celebrate our Galacto Girl. We had our appointment with the Metabolic specialist the beginning of November. As always, they tested her Gal1P, the amount of galactose in her blood. They want the number to be under 4. It had been under 4 for the last couple appointments so I was hopeful. This time it came back right at 4. They aren't concerned because she is doing so well and said it could have just been what her body was producing that day and not related to anything she ate. They didn't recommend a recheck so we will get it checked at her next appointment...which won't be until next fall. We only have to go back yearly now. Yay!

We also found out her Vitamin D is low. Not surprising since our strong-willed sassbox refuses to drink any kind of milk substitute (coconut milk, almond milk, soy milk...we've tried them all). The doctor prescribed chewables for her but trying to get the prescription filled has been a nightmare. Insurance wouldn't cover it because she's not over 65. Then I found out it was like $6 for the prescription so told them to order it and I would pay out of pocket. Then they couldn't find it in the amount the doctor was prescribing. After several trips and calls to the pharmacy, I finally gave up and went shopping. After trying Whole Foods I found them at GNC. Brought them home and....she hates them. GAH. I called the Metabolic clinic back and asked for drop recommendations. So, I will be ordering those  and hope they do the trick to get her Vitamin D where it needs to be. Other than that, the appointment was great. She is great. Just the same caution of "delays usually don't show up until around school age."

We often talk to FJ about being a Galacto Girl and having Galactosemia. It's a struggle to figure out how to make your two and a half year old understand that although sharing is very important - she cannot share food if someone offers it to her. I know it will be easier as she gets older but we will continue to have the conversation.

And then there are things she definitely understands...like how to turn our own words on us. So we often say "that's not safe for you" or "we have to make sure that's safe." Well a couple weeks ago miss smarty pants was eating her dinner and decided she was done. She pushed her plate away and looked at me and said, "No mama. Can't. It's not safe for me." :/ AHHHHHHH. I assured her that her mama would never give her something that wasn't not safe for her. Oh boy...we're in for it.

In other news - Francesca will be having tubes put in her ears next Wednesday, March 8. In the last year she has had a couple double ear infections and several single ear infections. At a recheck for the last one the doctor found that although the infection was cleared up there was still fluid in her ears. We went back two weeks later and it was the same, so they sent us to a specialist. They said her hearing is probably impacted to some degree, so hopefully the tubes will help. I know it's a simple procedure but am still anxious, of course. Prayers are appreciated!

She is a rare kid - in more ways than one (I mean, have you met her parents? Especially her dad...) but I wouldn't change her for the world. She is by far the best thing I have ever done.

Conference Recap

Five months after the conference seems like a good time to post an update. Whoops. Let's see if I can remember...

The conference was much like I expected. There were times I felt very hopeful and other times that I felt lost and terrified. But overall, it was a wonderful experience.

We met a lot of great people and learned a lot of tips for managing the condition. Two of the sessions stand out to me. One as a high and one as a low.

The low: Premature Ovarian Insufficiency. Bottom line, most women with Galactosemia (80-90%) have POI in some form making it unlikely (but not impossible) to have children. They said the best chance of a woman with Galactosemia to get pregnant is to do IVF with donor eggs because they have lower egg count. With that said, I know research is continuing and we have years before we have to really think about that.

The high: A presentation by a mother of two boys with Galactosemia about the importance of self esteem. She talked about everyday events that can be challenging for our kids and the importance of helping them believe in themselves so they can rise to any challenge. She also gave some great tips such as putting green and red stickers on all the food in the house - that way if a family member or babysitter comes over, they will know what is safe. It's also an easy way for the child to know what they can and can't have. She also talked about the importance of having the kids start asking questions and talking to the chef when you're out to dinner, at an early age. This will allow them to learn what questions to ask and how to explain the restrictions since as she said, some day mom won't be with them. It was also encouraging to later hear from both of her sons who are in college and doing well.

We also got to meet Dr. Fridovich-Keil who does Galactosemia research at Emory University. I had enrolled Francesca in a study with her lab so it was great to meet her and learn more about the research. We also enrolled FJ in another study.

FJ celebrating her birthday at the conference

One session has really stuck with me. A mom shared her story of refusing the newborn screen. As I have talked about before, the newborn screen is the reason Francesca is with us today. She was diagnosed because of the newborn screen - a simple heel poke - at 3 days old. I learned that there are people who actually petition against the newborn screen. The presenter shared her story of being approached by a nurse who claimed the newborn screen was a violation of privacy and it would allow the government to have the child's DNA. After talking with the nurse and not being aware of any genetic issues in their family, she signed the Parental Refusal of Newborn Screen. After her son was born her nurse (different nurse than previously mentioned) encouraged her three different times to get the newborn screen. After the third time, she agreed and because of the test found out her son had Galactosemia. Thankfully it was caught in time and he is now a healthy 7 year old. Her story made me realize I need to be a vocal supporter of the newborn screen. I need to share my story. I hate to think about what could have happened if we hadn't done the newborn screen and it is heartbreaking to me that people would advocate against a non-invasive and potentially life-saving test.

Apparently she thought it was okay to take
all the balloons, since it was her birthday!

The speaker also shared the poem "Welcome to Holland" - written by a mother of a special needs child. I've also read other special needs parents talk about why they don't like the poem. Personally, I really related to it. It left me in tears and still does.While we have been very fortunate so far and Francesca is not experiencing any delays, we know we could still have a long road ahead of us. And it's not what any parent expects or wishes for. It reminds me of when I blogged about how everyone tells you to have a birth plan but also warns you it might not go as planned but no one tells you your after birth plan might not go as expected.

We learned a lot at the conference. We met some new friends but didn't meet as many people as I had hoped. It was hard because they had activities at night but they started at the same time as FJ's bedtime so we didn't attend them.

The next conference is in 2018 in Denver, Colorado. We'll definitely be flying to that one. Oh - that's another thing I learned - driving to Georgia with a toddler is a questionable decision. Actually, the drive there wasn't the problem, but when we were driving through the mountains on the way home and FJ was screaming "OUT...I WANT OUT" at the top of her lungs, I briefly considered strapping myself to the roof of the car. Instead, after we were out of the mountains Chris frantically searched for the nearest park, which we immediately went to and let Francesca play before continuing the drive.

I'm looking forward to the 2018 conference and am currently brainstorming some fundraising ideas we can do to support the cause. Stay tuned.