We are still alive

Wow, I can't believe it has been over a month since I last updated the blog. It turns out that I really don't know how to say no. My friends are always giving me a hard time, but I really don't know my limits. I think I can do everything, and I can't. I spend so much time volunteering for things that take up my time, that there is hardly any quality time left to spend with my family and even less "me" time. Even though it has been almost a month and a half, not that much has happened, I will briefly fill you in, and then share some pictures.

Mackenzie update: In Pt/OT Mackenzie hasn't had much change. She has a little bit of issues with her left side being weak, but we are working on it. She still has OT and PT 2x's a month for now. In terms of her speech, there has been a little change. She is trying to use more words, but they aren't getting any clearer. She is finding ways to let us know what she needs, so she is communicating better. I downloaded a program to her Ipad called verbal victor that I am in the process of updating to use as an augmentative communication device.

Health wise, has been a little rough lately. A few weeks ago, Mackenzie got hives for the first time. I had no idea what they were and the kept moving. I had never seen hives before. So, I took her to the emergency room and spent a few hours there. They gave her a steroid and benadryl and sent her home. This past week, my child has thrown up twice. We passed around the stomach flu and she seemed to have got it Saturday night and then again last night. She got to sleep with mommy last night and she loved it.

A month or so ago, we were having issues with her weight and we made some minor dietary changes and that seems to have helped because her weight has remained stable. She has not gained any in almost 2 months. Yay!!!! I am so proud of her. Also, we are no longer on growth hormones. Believe me before you say something, this is not by choice. Due to circumstances beyond our control she is off of them for the time being. I am hoping to have her back on them by the first of the year.

Mommy update: I am doing pretty well. Busy with work and also, I have been training to run the Las Vegas half marathon the first week in December. My training was going well, but then I caught the stupid stomach flu and took a few steps backward, but I will continue to train and do my best. I have been having fun doing lots of fun things with Mackenzie, but instead of typing a novel blog post, I will show you:

Feeding ducks at Bonnie Springs

Playing around at Bonnie Springs

Riding Blueberry

Enjoying a sucker during trick or treating at Springs Preserve (before you judge I am an everything in moderation parent)

Where did September go?

September flew by!! It seems like yesterday was labor day, and now it is already October. September was so fast, i hardly remember what we did. I know Mackenzie's grandma came to visit her, and we went to sport shorts and playgroups. We had our transitional meeting with the school system, and had therapy, nutrition and and endocrinology appointments. i know they happened, but I can hardly remember them.

Fall is my favorite time of year, so I always look forward to September because it signals the start of fall. I love fall. It has always been my favorite time of year. Fall is time for apple anything, mainly hot apple cider, clam bakes, pumpkin picking, leaves changing (although not so much in Las Vegas), and great outdoor running weather. After a long hot summer, it is nice to put on a pair of jeans and have a bowl of chilli with a mug of hot apple cider.

I hope to pass on my love of fall to Mackenzie. I want her to love this time of year as much as I do. Granted, the focus will be less on food and more of the color changing and outdoor activity, but still, I want her to love it as much as I do. I hope you too enjoy fall. This weekend, go do something outside and enjoy my favorite time of year.

Augmentative communication device or sign language?

Mark, our speech therapist came out to the house Wednesday and as is par for the course lately, it was a rough visit. Mackenzie had quite a few melt downs and was not interested in speaking or listening. She did do a few things well, such as using a program called verbal victor on his ipad  and following commands such as sticking out her tongue (or at least she did half the time). I would say it wasn't our worst visit, but it wasn't the best either.

At this visit, the therapist let me know that it is time to make a decision on what communication strategy we want to focus on to give Mackenzie a way to communicate. We can use the ipad to download a program and use it as an augmentative communication device. This will allow her to have a way to let us know what she wants and what she needs. The other option is to learn and use more sign language.

There are plus sides and downsides to both. The plus side to the ipad would be that I think it would be more fun for her thus giving her incentive to want to use it. Another plus side is that according to our speech therapist, is augmentative communication devices do not stop speech.  The downside is we would no longer be hands free. The ipad would come with us everywhere we go. We would have to rely on it as our means of communication.  The plus side to sign language is that we can actually have face to face communication. Another plus sign is that it is free to sign. One downside is that as Mackenzie gets older, teaching her new signs has been more difficult and the words she has a sign for, she has stopped saying.

I think that before I make a decision, I will research the different ipad programs we can buy and download. Since some of the cost a lot of money, I want to be absolutely sure before I make a final decision. While i am doing that, I will learn a few new signs and see if Mackenzie can pick up on them. I just really want to give her a better way to communicate.

Endocrinology Update

Today was Mackenzie's three month check up with her endocrinologist. For those of you who don't know what that is, it is her doctor that monitors her growth hormones. Today at the visit, Mackenzie weighed
33.4 lbs. Since her visit three months ago, she gained 4 pounds and went from the 75th percentile to the 90th. Between age 2 and 3, children are only supposed to gain 4 to 5 pounds total, and Mackenzie gained 4 in 3 months. I have not changed her diet in anyway. I know here in Las Vegas the weather is very hot in the summer so outdoor playtime is limited, but I don't think that her exercise/activity level changed too much in the last three months. So what happened?

There is a new article published by Dr. Jennifer Miller and a few others that lists the phases of Prader-Willi Syndrome. The phase that this puts Mackenzie in is phase 2 sub phase 2a. Phase 2 characterizes the weight gain phase and phase 2a is having weight gain without a significant increase in calories. The next phase 2b is weight gain with increased interest in food. I haven't seen the whole publication just the abstract but this is the info that is provided in it.

We have begun to notice more food awareness. If you even eat a single potato chip in front of (or even in the kitchen which you can see into from our living room) Mackenzie, she will sign eat. Sometimes she can be distracted, but other times she will continue to sign it and get more frustrated. Also, sometimes I can get her to have a drink instead. It is getting harder and harder. If I leave anything out on the table, or in her reach, even if it is sealed she will get it. I know that a lot of these things are typical of most 2 year olds, but its hard not to wonder if this is it? Our endocrinologist, says that as long as she is not serving/helping herself on a regular basis, we don't have to be too concerned yet.

Dr. Dewan (our endo) is worried about the weight gain though. He increased her growth hormone dose from .5 to .6 and advised to turn the tv off and be as active as possible. We joined an indoor playground here called Child's play and we try to go once a week and Mackenzie takes a class called sport shorts which she gets to run around at. Also, I will be on the lookout for lower calorie dishes the whole family will like because she needs to see all of us being healthier. Feel free to let me know if you have a favorites low calorie recipe you can share.

We go back to the doctor in three months and I am hoping that her weight gain will have slowed and she will still be my happy non hungry little girl.

What to do if something is too hard

This is a lesson my 2 year old tried to teach me this week. She has been trying to teach it to me for a while, but I wasn't understanding. She showed me that if something is too hard, you play a game by pretending to fall down and laughing, by running away laughing, or by giving someone a hug in the hopes that they forget what you were supposed to be doing. She also says to find a way to cheat to make seomthing easier, such as turning your body so she can more easily use your left hand instead of your right. She is really good at what I call avoidance.

This has been going on for a few weeks now, but I totally missed that it was happening. During Mackenzie's OT/PT/ST that is here at the house, she has been very unfocused lately. She has even begun to be downright defiant. This past week I noticed it was defiant but in a class clown sort of way. Her OT (occupational therapist) made a comment last week that Mackenzie seems to be finding cheats, easier ways of doing things, when she can't do something instead of still trying to do it. Last week, we were working on picking up one object off a chair and transferring it to a chair that is on her other side. She did great when she was using her left arm/hand. When it was time to use her right arm/hand, (we moved the objects to start on the other side), she turned her body around so she could use her left. When forced to use her right, she threw the blocks instead of nicely placing them as she had been.

The thing she tries to avoid most is her speech and language therapy. Her speech has almost seemed to go backwards instead of forward. Sounds I used to hear her make, she can no longer make and instead of imitating during her exercises, she goofs off or runs to snuggle with mommy, which normally I love but not when it is because she doesn't want to try something. She has always been my strong little girl and I want her to succeed. I am at a loss on how to help her and the communication difficulties only seem to be getting worse instead of better.

So, what I am going to do if something is too hard? I am going to lead by example and show my daughter to how to power through, even if I want to goof off, or run away.