Progress!

Colleen’s IEP meeting with the school was earlier this week, and one of the comments they made was that we brought a different child with us back from Boston. I had to think about that statement for a while. Colleen was exploring more. One of her favorite things to do currently is to throw a ball and chase after it. She’s more vocal, which by that I mean she is making different sounds; ones she hasn’t made before, like a “y” sound. And she is showing far more spunky personality. Doesn’t want to be held? She will grunt and try to shove you away. She might not be able to tell us what she wants, but she can certainly express her displeasure! 

The most noticeable progress I’ve seen is standing from sitting. On Wednesday night, I was going to put dinner in the oven. She had a disc toy that plays music, and she likes to sit and spin it around because of its shape. Well, she was sitting one second, and then the next, she was standing there! Maternal instinct kicked in as I ran over, praying she didn’t fall over. She can be a bit wobbly, but she spent the next few hours before bed standing up. There were some falls on her butt and some getting down on her own. But she did it over and over. Then she slept for 14 hours!

I’m so incredibly proud of her and the progress she’s making.

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Happy November!

Hey there! How’s it going. Life has been busy, but I have some updates to share.

First and foremost, my little girl is 5.. 5!! The days are long but the years are short. Happy birthday to my sweet, sassy and strong little girl. You give the best hugs and have an infectious laugh. Your strength is far beyond your years and I am so blessed to be able to watch the wonder in your eyes as you learn and grow. ❤
It’s Epilepsy Awareness Month! I have had a campaign planned for a while, but my designer brain hasn’t been able to come up with an idea for it yet. I’m hoping that I can have something ready for Purple Day coming up in March, so stay tuned for that!

A few years ago, I heard about the Embrace epilepsy watch. At that point, it was at it’s funding stage but I was very intrigued. As funding progressed, I knew I had to get one for Colleen. So, last year she was approved to receive a watch donated from the Epilepsy Foundation. And a few weeks ago, we finally received it! It was well worth the wait. Bar some charging issues that I’m currently trying to resolve, I am extremely happy with it. I wasn’t sure, at first, if it would be able to detect Colleen’s seizures. Up until that point, she was having silent ones so it was almost impossible to tell. But since March this year, she’s had seizures where her arms jerk. My only consolation in this is that the Embrace can and has caught this type.
Last week we were in Boston for a followup. Her EEG really hasn’t changed. She had a seizure before her appointment that morning and another when we got home late Friday. It’s a challenge to wonder if there were triggers or if it’s just happening. If there was a trigger, I think lack of sleep is high on the list. Otherwise, I don’t know and it makes me so sad. She was fully weaned off of keppra and is now only on depakote sprinkles. She only has room to go up 1 more pill a day on this. Beyond this, I don’t know what we’ll do. This year has not only seen a dramatic increase on seizures, but the type as I mentioned before. I can only hope that maybe as she gets bigger, they’ll eventually cease. But, one day at a time. 

Blah.

Now would probably be a great time to update, as I sit here on the couch trying to ignore the insane urge to itch. But I’ll get to that…

It’s been a while since my last update. Overall, Colleen is doing well. After her last gastroenterologist appointment, we’ve been getting her on a small dose of miralax everyday. This keeps all things functioning well in the belly and we have a very happy little girl for it!

She has her kindergarten transition date meeting scheduled in May and so I was happy to see a lot of her current therapists planning on attending. With their knowledge, I have no doubt that we’ll get her everything she needs to get progressing. I also really want to find out if they offer music therapy, as I think that would be extremely beneficial to her. Girl loves her some music. Any kind. Even my wails on the violin. 

Last weekend she got to go to two birthday parties; one for her cousin Mia, and one for a school friend. Colleen absolutely loved the little ball pit my sister had out. She skipped her early afternoon nap of course, so she seemed tired throughout the party, but still a happy camper overall! 


Sunday was her school friend’s party. It was at MyGym and I must say I was very happy with them. They helped Colleen sign happy birthday to her friend, and after zip lining, they took out a little seat so she could take a turn as well. 


Nap may have also been skipped prior to this party as well. 🙂 

After such a full weekend, I was normal at all excited to go back to work Monday. Can we have an extra weekend day please? During the day, I noticed some red on my face, but I attributed it to that lovely monthly. Later that night I put Colleen to bad and noticed I also had a rash starting along my upper chest. Panick ensued. Whatever this is can’t get spread to Colleen!

I went to urgent care early Tuesday only to be met with the hand to chin and squinty eye look as the doctor tries to figure it out. No ideas from them. Just prescribed some lovely steroids to help with the rash and to take an antihistamine.

At this point, it’s not better and spread some more. Trip to my primary lead to more “I don’t knows.” And “let me know if it gets worse.” It was worse, which was why I was there. Two antihistamines now and I’m almost done with the steroid pack. 

Hoping this weekend will help. There is absolutely nothing new that I bought and used. Everything I use is what I’ve had. Frustrating but it might take a while to get in to see an allergist. 

Haven’t worked out in almost a week. Minus the hot bath Monday night, working out was a very bad decision, so I’ll have to concentrate on nutrition over exercise. 

End of the metro42 challenge 

It’s the end of our workplace fitness challenge, and I am happy to report that I went from 138.8 to 126.6 in those 42 days.

 

I weighed in at 125.4Ibs this morning. I like to weight in right after I wake.
 
It’s only taken me four and a half years to get down to my pre-pregnancy weight. Not exactly awe-inspiring, but with that, I would like to say how important nutrition is to your weight-loss goals. 
What I’ve learned:

1. I was consuming far too much processed sugar. I normally have coffee the morning, and coffee later on in the afternoon. These both were loaded down with sugar and cream.

2. I can’t say enough about drinking enough water. I try for 70 oz/day (my body weight divided in half.) I’ve heard this is a good way to ensure you drink enough instead of the old 8 glasses a day rule. 

3. Protein and good carbs: I’m over red meat. Vegan/vegetarian is something I would really like to do for both ethical and health reasons, so it was easy to stop eating red meat. Not quite there yet, so I did eat a lot of chicken and turkey during this process. Fruits and vegetables for carbs! 

4. Overall, a “clean” diet. Not a huge fan of that word, but essentially nothing that comes highly processed. I’m a big fan of foods that don’t have crazy ingredients on the list. I became a huge fan of cauliflower rice curry and turkey meatballs. 

5. Lastly, eating enough. Fuel your bodies. You need more than 1200 calories.(Seriously, who came up with that?!) My calculated BMR is about 1350, meaning that I should never eat under that. This is what your bodies uses for it’s basic functions. I have my MFP calorie goal at 1572, but I’d like to have maintainable cals around 1700. 

I hope some of this information is beneficial! I’d be happy to share more about the process, and I’m excited to continue on, and break below 120. I don’t have a specific goal in mind, but if I can lose a bit more fat, gain some muscles and tighten up my stomach muscles, I’ll be happy. 

Help..

I’m writing this in hopes that someone who may have dealt with a similar issue might contact me and give me some glimmer of hope for dealing with some of Colleen’s stomach issues.

Ever since she was a baby it has been extremely hard to burp her whenever she drinks. She seems to go through phases where it’s super easy, and then periods of time where you have about as much luck getting a rock to burp. It’s immensely frustrating to try to guess what exactly is wrong since she can’t communicate, but worst of all, no parent wants to see their child in pain. A pain that you can’t really do much about. I’ve tried those darn gas drops and shelled out $18 for a teeny tiny bottle of homeopathic remedy in hopes it would solve the issue. I’ve rubbed peppermint oil on her belly.

When she does in fact burp easily, it’s a gleeful, happy time. You would’t think it possible for someone to get so exciting about a simple burp, but I will tell you, it’s cause for cake and balloons in this household. Just last night though, I spent almost 2 hours walking her around after a simple sip of water. 2 hours. And still, she would not burp.

I’ve had some question how exactly I know she needs to burp. After she drinks, you can hear things sloshing around in her belly. After she does burp, sloshing disappears and we have a happy baby once more. If it happens to stay in longer than it should, we have a very miserable child until it’s out.

She has been low-tone since birth so after she was diagnosed with cerebral palsy, things started to make sense. I’m guessing it’s your muscles that help to push things where they need to go. And if hers are weaker, then of course she would have difficulties. I still can make no sense of the phases though.

I would absolutely love to connect with other parents who may deal with similar situations, who may be able to offer some advice or even sympathize. Help.

Busy, busy!

How is everyone?I need to make sure I’m updating more often, because as I sit here typing, it’s hard to make sure I don’t miss anything in this update! 
First, on the 11th, I started the Metro 42 challenge. I think, for me, this was a great way to start a healthy eating lifestyle. I started exercising regularly in December 2012. There is absolutely no reason, other than horrible eating, that I shouldn’t be at my goal. 
It’s been a long learning process. Making sure I’m eating enough, and tracking is a great way to see how you may be possibly eating too much in other ways. For me, sugar intake was too high. I put way too much in my coffee. And sometimes, I’d have multiple cups. This eating challenge has not only helped me see this trend, but also change it up. I love tea. Tea is a great coffee substitution. Also, if I have coffee, a use a little agave nectar instead of sugar and far less creamer as well. (Sometimes I use the dairy-free). 
I started this challenge at 138.something and this weekend I weighed in at 131.2! Starting weight might have been a little off. We weighed in in the afternoon on the 11th, so I had eaten and everything. For home, I like to weigh myself in the morning, before I’ve eaten. Either way, I haven’t seen this low number since February last year. It’s neat to look at MFP, and see the graph. Over the last year, I’ve stayed between 131-139, which is a bit of an accomplishment, but I’m still overweight for my height, so I’m eager to see how the remaining weeks will go of Metro 42.
  
I also have every intention of writing out a shopping list before I go to the store. I need to add more vegetables to my diet and maybe change up my source of protein. Of everything I’ve learned about fitness, weight loss and nutrition, I think it is most evident that your health IS 80% nutrition and 20% exercise. You can’t out-train a bad diet. My results over the last year make that clear.
Colleen continues to do well off her one medication! There is still no sign of her new bed, and we are also still waiting on a wheelchair. We got a letter at the beginning of the month stating that part of it had been declined. It was crushing. There’s nothing like knowing your child needs something, and insurance denying it. I feared that it might have been because we switched her back to Jonathan’s insurance (my company switched providers, as the one we were with increased their rates 49%!!) Ridiculous. So, with that switch, even though it has been a long time since the wheelchair was ordered, I thought that it was the reason the wheelchair was declined. It wasn’t. Letter stated medical necessity. Ugh. So frustrating. I need to look into the status of this and the bed. Her current bed is wearing already and I hate that she’s constantly getting herself stuck.
I was also excited about her being able to start an adaptive dance class. We were first told of it last year by one of her doctors who was going to add Colleen to the list. Also, her physical therapist said she had also requested that she be added to the class. I inquired about the start, since I thought it was supposed to be this month. I’m sad to say that there is no room for her currently, but she is first on the waiting list. While trying to research the program, I found an article about dance helping children with cerebral palsy, so I would be so excited if Colleen had the chance to do this. Fingers crossed that she can start sometime!
Whew! I hope I didn’t miss anything in that! Till next time, xoxo. 

2016 Goals

2015 was a blur. I wish I could stop the pace at which everything seems to go. 

Top moments in 2015 for me was earning my Bachelor’s degree. Finally. I changed jobs, which was a bit nerve-wracking, but I love it. Colleen was weaned off of a few medications, and it’s been for the best. What else?! There’s probably so much more. Overall, it was an okay year. 

I do think it’s extremely important to write down your goals. If self-improvement is your thing. It keeps accountability, and it’s great to look back and see how far you’ve come.

1. Getting healthy. I’m better than what I was, but I need to take the time and focus on nutrition. I’m starting a work challenge on January 14th which will involve a lot of focus there! 

2. More yoga. I started taking a class once a week while I was at Welch Allyn, and I really enjoyed it. I think it would be beneficial to both body and mind.

3. Patience. Being more aware of my feeling and trying to relax. I can let myself get worked up over things, and I lose a lot of patience. I don’t like this side of me and I want to set a better example.

4. More photography and more time to be creative. I am a creative at heart, and I don’t make a lot of time for myself for this. I miss photography, and I think overall, it will help me become a better designer. 

What are your goals for the new year?