Milestone

Lauren will be 4 in a couple of weeks! I cannot believe my baby will be 4!

Last night was her first night in her entire 4 years of sleeping without her binkis. Yes that is plural.




These are her most prized possessions. She affectionately calls them by their colors. This set is called white, pink, pink. Did I mention she loves them?

If ever she is not cooperating with me a conversation like this happens:
Me: Lauren, do you want to keep your binkis?
Lauren: YES
Me: Then you need to help Mama.
Lauren: OK

It's been the best bribery ever! But sadly that era has ended and honestly I am probably more sad about it than she is.

Actually she has done great without them. She understood when I said they were gone and hasn't asked for them since. It is strange to send her to bed without them but seriously, she is almost 4, it's about time!

I'll just have to find another thing she loves enough to make her listen to me! Wish me luck!!

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Laundry

These piles of laundry may look very normal but they are actually quite interesting (to me at least!). The big pile is Abby's and the small one is Lauren's. Believe it or not, they represent the same number of days of wear. This size discrepancy is not abnormal around here. Each time I fold laundry I see this same thing.

The question is, does Abby go through an abnormally large amount of clothes in a given period or does Lauren go through an abnormally small amount?

And the answer is......(I know the suspense is killing you!)...... Sadly it is that Lauren goes through a small amount of clothes. The even worse part is that since she doesn't dress herself yet it is my fault. This is terrible to admit but she will wear the same clothes for multiple days quite often and yes, she wears them to bed too. Why am I admitting this?!

Tonight I decided that as I have become a more experienced parent (older) I find that I am a much better parent in some ways and a worse one in other ways. This clothes situation with Lauren is definitely one of the things that I am worse with! Maybe I'll write a post someday about the things I'm better at but not today.

So, if you dressed your child in fresh clean clothes this morning be proud of yourself. I'll try to follow your example tomorrow!

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Visionwalk and BBS Conference

Just a quick post here. I'm sitting in the Atlanta
Airport on my way home from the LMBBS Conference at Duke University in NC. It is a bi-annual conference for Bardet-Biedl Syndrome. It's my first time attending this conference. I should say our first time because Nate came also (which has been fantastic!). It was a great conference where I learned a lot and met a lot of wonderful families who are dealing with the same issues we are.
I also wanted to mention that the Visionwalk was his past weekend while I was gone. I was sad to miss the walk but knew the BBS conference was important.
I want to thank all the people who supported us and donated to our team. We were able to raise just over $2000!! I appreciate so much every single dollar that was given. I felt love and support from all of you. The dollars given will be put towards research that WILL prolong or possibly save Tyler and Lauren's vision.
I cannot thank you enough!!!
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Feeling Down

In the past 2 weeks I've had 3 IEP meetings. The first was for Alex. He has been in speech therapy to correct some letter sounds. This meeting was actually to sign off on ending his therapy. He decided one day that he would fix his sounds and get out of speech! He was diligent and quickly fixed his sounds and he has been very consistent since then. I am so proud of him for recognizing and fixing the problem!!

The next meeting was for Lauren. Her meeting was just her annual meeting to review and set new goals. It was the best meeting I've had with her team and I appreciated connecting with her teachers and therapists better. She has made some great improvements this year in preschool. The biggest struggle she has is that she wants to do everything in her own way and on her own time! The teachers and I exchanged ideas and suggestions and I felt like we were working together to support Lauren. It was great. We also spent quite a bit of time going over her results from NIH. We talked at length about the vision problems that she will inevitably have and discussed things to watch for with her. I was so impressed that I could do that without getting emotional! I feel like I can talk about the future without really connecting that it will really happen. It's a strange disconnect in my head.

The last meeting was to review Tyler's NIH results with his IEP team. Again, it was an interesting hour of talking about devastating realities in a very detached, matter of fact kind of way. Tyler's vision therapist reported on how extremely quickly Tyler is learning Braille, that he has a real gift for learning it. I was so happy to hear that but a thought popped into my head that maybe he has been given that gift to learn because he's going to need it. The thought hurt and caught me off guard. I didn't want to cry so I pushed it aside.

I am starting to learn that I can be strong when I need to be but the emotions will hit me at some point. That point seems to have come today. I think I push the emotions away and try not to feel them and then it makes me feel terrible inside after a while. So today I'm giving myself a day to feel the emotions and hurt a little for my kids. Sharing these feelings are part of my effort to feel them and move forward. I'm sure I will feel better tomorrow but for today I'm content to be a little down.




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Time with Abby

Today I went on a field trip with Abby and her class. We walked to a local nursery to learn about plants. Here's Abby sitting with her classmates.



I've had a couple of opportunities to spend semi-alone time with her this week (semi because Lu is around too). Abby is such a happy, bubbly, fun person to be around!

I surprised her this week by checking her out of school and taking her to lunch. I've never done that before but I will be doing more of it in the future. It was so fun to steal her away and get to enjoy some time with her.

It's been a fun week with her.

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NIH report

I was so happy to look on my porch yesterday and see these two packages.

These are our official reports from our visit to NIH.

I left NIH in November with some information but I've been waiting for these reports to get the complete wrap up of all we did there. The reports where really well put together and easy for me to understand. Most of the information was what I had already heard but it was interesting to read through it all.

The one thing that really stood out to me was the opthamologist noted that Lauren has mild retinal degeneration in both eyes. He was not that clear with me when we talked at NIH so it took me by surprise a little. I am grateful that her eyes are not worse at this point but it does lead me to believe that she will be diagnosed with RP in the future.

Although I have known that this was probably what we would be dealing with I had not given it much thought lately. Reading that yesterday made it more of a reality and was a little emotional for me.

Getting the reports was good motivation for me to continue trying to make the needed diet and exercise changes at our house and has given me a better idea of what specialists I need to get the kids into next.

I am still waiting to hear back about the genetic testing we had done. I don't have any idea when we will hear about that so I will just keep waiting.

Reward

I just had a little experience today that I wanted to share.

I've had a few things on my to-do list that I have been putting off for a while. They are church related items that I KNOW need to be done but just haven't been able to get excited about for some reason.They involved activities that I don't like doing such as making phone calls, dropping by unannounced at people's homes, and putting myself out there to others. I know, not really that difficult for some but difficult for me!

I finally decided that no matter what I would get these things done today. So, I did. I pushed through my insecurities, and worries and got them done because they are my responsibility.

After I finished and walked into my quiet house (all the kids were at school, yeah!) I had a very calming, peaceful feeling in my heart. I'm sure it was there for two reasons. First, simply just peace of mind that I can quit thinking about the looming tasks! And second, because I did want the Lord has been wanting me to do.

I feel like that peace was the REWARD for me doing what I know is right even though it was not easy for me. I'm so grateful for the peace I felt and hope to remember it so that next time there is a looming task I won't worry so much and put it off. I will hopefully remember that I will be supported through difficult tasks and be given added peace for doing what is right.